Disappointing recent Consultantation with Neurologist. Disregarded all the information I provided about ferritin and iron / RLS

[Freegaza786]

Hi all,

I last spoke to my neurologist in October 2021, where I was being advised to consider taking pregablin for RLS. I was advised the same on previous consultation after coming off DA (Ropinrole).I don’t know if you recall, I had been on pregabalin previously 450mg for anxiety for 2years. Very reluctantly I experimented pregablin again, yet after 14 days a does increase intensified my symptoms almost straight away. I stopped.

Over the last few weeks my daytime symptoms have vanished and I have very little night time symptoms. This being down to taking supplements, including iron every other night. Avoiding triggers. But also nightly fasts which have helped a lot. But more importantly letting my receptors repair after the damage caused by the DA. Even with no RLS I have still struggled with sleep due to my long term insomnia.

I was hoping the neurologist would agree with my approach.

I asked for my recent iron ferritin level and was told my ferritin was not requested in recent blood test. He went on to say, ferritin levels are not a consideration for RLS, for example if you was in a car accident your ferritin levels would go high anyway. (I’m left confused ) your Iron was at 7 and after the infusion it is 29. We don’t need to measure your ferritin. It isn’t necessary. And to stop taking the iron every other night as it will not be doing me good.

He then went on to say after the pregablin, the next medication would be tramadol which I have already been taking over a year very rarely on those really bad nights. He advised that I should be taking it 50mg 3 x a day for a month then decrease it to 50mg 1x a day in the night.

I advised that my symptoms are a lot better without medication, taking iron every other night, nightly fasts, avoiding triggers. And I was already taking tramadol maybe 2 nights a week. Should I really be taking tramadol everyday.

I was also told in previous consultation a recent MRI showed damage to my Myelin sheath. It now turns out it wasn’t my MRI results but another patients. ( I’m completely shocked)

I was going to mention medical cannabis, but seeing how the appointment was going, I didn’t even bother to mention it.

Someone advised to ask my Psychiatrist for trazodone to help me sleep. I spoke to her a day before the neurologist and she was happy to consider it and has gave me a initial prescription.

After telling the neurologist, he completely advised against it. And said not to take it.

I think the best way forward is not see any neurologist for RLS and to manage this all by myself .

Thoughts anyone?

[Doversoul]

Well I suggest that you see your GP and asked for a referral to an alternate Neurologist for 2ND opinion. My own experience with 5 Neurologist over 7/8 yrs was very unhelpful. It was clear to me that once a Neurologist has checked you for Parkinson, MD , MS and M Neuron and found that they didn't apply , they had little interest to be supportive to find a suitable treatment for PLMD/RLS. In my case I suffered many years of augmentation due to being constantly prescribed dopamine agonist base tablets/patches. Gabapentin and Clonazepam were alternatives prescribed but didn't solve either PLMD or RLS , and I was then put back on Ropinirole/Dopamine agonist.

Eventually, I managed to get referred to a UCL hospital Neurologist who held a once a month surgery at a hospital local to where I lived.

He was very supportive and to assist my sleep prescribed Trazadone . Eventually he referred me to the Sleep disorders team of Neurologists at Guys Hospital. They very quickly diagnosed that I needed to stop medicating PLMD/ RLS with Dopamine agonists. I was prescribed Pregabalin and over a 6 week period came off of Ropinirole and ramped up on Pregabalin.

I have never looked back. I still take Trazadone for sleep. The Pregabalin suppress both the PLMD and RLS symptom's 24/7, and I can live a normal life.

Iron levels , are important. Treatment for iron deficiency involves managing the underlying conditions, especially anemia. The iron supplements under doctor's advise may provide some relief, but as vegetarian, my diet keep Iron at adequate level.

You will find an article on diagnosing PLMD/RLS , on the RLS UK web site. You should find sufficient information there to score your PLMD/ RLS and have information that will help you to convey the degree of suffering and impact to a Neurologist.

Good luck.

[Freegaza786 in reply to Doversoul]

Doversoul thank you for your reply. Asking to be referred to another neurologist for a 2nd opinion is what I have been considering. Just going to be a battle to get my GP to agree.

Sleep has always been a issue way before RLS. RLS just made it worse. Now RLS has settled, sleep still non existent. Collected my prescription of trazodone 50mg today so fingers crossed.

[Doversoul in reply to Freegaza786]

If you are worried as to what evidence you could offer the GP that support referral to aa alternative Neurologist, I would point you to the RLS UK web site where under the heading 'About RLS' if you search you will see a heading 'RLS Monitor'. Print off a supply of the forms and complete on a daily basis. Take to your GP consultation and show how your like is being impacted by RLS. If you get your referral to a different Neurologist continue to complete the monitor and take it with you. This should get your symptoms taken seriously.

You will also find under the heading 'About RLS' although currently is to know about PLMD and RLS. You may need to suggest that you GP also takes alook at the material on the RLS UK site.

Trazadone ought to see you off to sleep. But RLS symptoms can ge be so bad that you may find that the Trazadone takes several hours to work. Alternatively, you may feel knocked out the following morning. Varying the time you take Trazadone can help with managing how it helps you sleep,

Take care, and hopefully you will get the help you need.

[Butterflysun1 in reply to Freegaza786]

I would just manage it yourself. You seem to be doing a pretty good job & the treatment doesn’t need to be managed by a neurologist.As we know iron IS relevant ( yes, ferritin can go up under some other circumstances but that’s not the point ). You can buy your own iron. Your GP can check Ferritin. Maybe show him/her the Mayo clinic guidelines?

If your psychiatrist will recommend trazodone & it helps you & doesn’t cause problems maybe ask your GP to prescribe that as well.

The last thing you or anyone else needs is an ignorant & dismissive neurologist masquerading as an expert!

[Butterflysun1 in reply to Butterflysun1]

I meant of course manage it yourself with the help of your GP. Neurology waiting lists are huge & GP’s ( if you’re in the UK ) can prescribe everything necessary if they have enough info eg all these excellent references folk have supplied on this site. You would only need an expert if you need an iron infusion & if you are now symptom free virtually you sound to have found a pretty good formula

[Freegaza786 in reply to Butterflysun1]

Butterflysun1 thank you for your reply.

And your positive words. I honestly don’t know how we all are getting through this. It’s absolute torture and exhausting. Having to find about this condition ourselves and best course of treatment.

My psychiatrist did prescribe trazodone which I took last night 50mg, by the time It took affect 5am the kids were awake at 7am. So now just feeling really hunger and more exhausted then normal.

Thank you again

[Butterflysun1 in reply to Freegaza786]

I completely understand what you mean that it is absolutely exhausting & the only folk who ‘get’ it in the main are those who have it, otherwise folk seem to think you are being ridiculous.If you have kids waking up you sound relatively young to have it this bad which makes me think you may be one whose iron is possible low & relevant.

But if you have few symptoms now apart from marked insomnia with restlessness then that is a different matter - I see you have a psychiatrist so can he/she help further with this without suggesting anything which might spark off the RLS again!

[Freegaza786 in reply to Butterflysun1]

Butterflysun1 i just turned 31 in December.5 kids ages, 17, 8, 6, 3, 1. Eldest isn’t really a kid anymore.

To be honest the RLS is under control more better then it ever has been. Last night symptoms were a one off which I didn’t help myself.

I’ve now Had a cup of tea, been for a long walk. Feel a lot more composed.

Going to try take the trazodone again tonight.

Feeling more positive.

Thank you for even taking the time to respond to me. I appreciate it. Thank you

[Butterflysun1 in reply to Freegaza786]

You must live a busy life! Maybe you’ve managed to raise your iron by taking the tabs you have been & that’s made a difference - worth getting monitored & continuing I would think. It’s easy to get low iron stores when you’ve had several recent pregnancies - it hadn’t to me ( a very long time ago now ……

[Butterflysun1 in reply to Butterflysun1]

I mean it happened to me, not hadn’t

[Hidden in reply to Freegaza786]

Freegaza, so sorry to hear about your horrible night. Can you take a nap or just close your eyes and curse the day you were born like I sometimes do? Trazodone is one of those drugs where the lower the amount the more sedating. I would take 1/2 pill which is 25mg rather than 50mg. A drug called mirtazapine has this same strange paradoxical effect. At very low doses, like even 3mg (lowest pill is 15mg) it is very sedating and MAYBE won't trigger RLS symptoms. At higher doses it is an anti-depressant and is well-known to trigger RLS.

Well here is the ultimate (which I always recommend last) treatment for insomnia. I always have a stash in the cupboard.

medhelp.org/posts/Anxiety/I...

If you need it, you need it. I know you took Xanaz (or was it Ativan) with bad results on your personality, but this particular benzodiazapine has a different chemical structure than the rest and the dose you would need is extremely low. Begin with .25 as suggested in article. It's very calming just knowing this is in the cupboard. Leave a message for your psychiatrist and see what she thinks, especially after letting her know the Trazodone didn't work the way you hoped.

[Freegaza786 in reply to Hidden]

Hidden my saviour

Talking about mitazipine, I don’t know if you recall I had been on that for long time 45mg and stopped it suddenly around May 2020 and since my insomnia has just got worse.

I don’t think I’ve helped myself with stopping all medications just to improve my RLS and in the process worsened my insomnia.

It’s bedtime routine now 7:30pm so when I get a chance il have a look at the article.

Something else has crossed my mind.

My 6 year old is being assessed for ADHD, my 3 year old is non-verbal and being assessed for ASD.

Could it be something more underlying that is causing the insomnia? Maybe I have ADHD or Autism?

I just don’t know, am I clutching at straws.

[Freegaza786 in reply to Freegaza786]

And it was Lorazepam and DiaZapam I had a adverse reactions too

[Hidden in reply to Freegaza786]

Well, if you have any of the mirtazapine left, especially 15mg tablets you can shave off an amount equal to one or two sesame seeds. It's ridiculously sedating and somewhat anti-anxiety. Anything more and it will trigger RLS.

The article I sent you isn't an article, it's a 10 line statement from a non-expert. However, she does cite to Dr. Teitelbaum. He wrote this book called "From Fatigued to Fantastic (1996)" He prescribes Klonopin for his chronic fatigue patients even though all they do is sleep. He believes that Klonopin will put his CFS patients into that deep restorative sleep which he believes they tend not to go into and that this will help with their daytime fatigue. I actually love that book.

Don't all boys (and men) have ADHD? I've never met one who doesn't. Maybe the Dalai Lama. It's just a matter of degree. It lessens with age. It did with my son who got rather average grades in high school (lack of attention) and then got straight A's in college. College is less regimented than public school and kids tend to flourish when allowed to do things in their own way. As far as autism goes if it were my son I would stop all gluten and dairy immediately. Not the cause but just not good for them, hard to explain. I know it seems like these substance are in everything, but they're not. More fish (omega 3) is a good idea as well as weighted blankets. Last but not least is giving them a tablet because alot of times that is a way an autistic child can communicate. I wish I could suggest a good pro-biotic, because supposedly there is a strong correlation between the gut microbiome (along with a genetic pre-disposition) and the symptoms of autism. I haven't researched it in several years but I know they were trying fecal transplants on kids with autism. That would be down the road anyways. Plus, it might not even be autism. If two languages are being spoken in his world then it seems these kids don't start speaking until later.

[Hidden in reply to Hidden]

Ok, just read that two language thing is more or less a myth.

[Hidden in reply to Hidden]

And just read that the fecal transplants are really only for autistic kids who have digestive issues. GI issues is a common secondary disorder with autistic kids and it is hoped that fecal transplants will alleviate this for them.

[Freegaza786 in reply to Hidden]

Don’t all men have ADHD

It’s been a dark day (11pm now) and that comment has truly made me giggle, (thank you) I needed that lift.. and besides i could argue you was being sexiest (joke).

I don’t have no mitazipine left, I’m going to try the same as last night 50mg trazodone. I would half it but it’s a capsule not tablet.

What you say about the smaller dose being more effective is ringing some bells.

Around 2017 after being on 15mg mitazipine for about a year, there was period of 3 months when I went away and increased the Mitazipine to 45mg. Upon my return I obviously ran out and GP would only prescribe 15mg until documentation had been sent over to confirm the dose increase.

Upon taking that 15mg after being on 45mg for 3 months, I was knocked out like a light.

I’ve missed my iron bisglycinate which I take every other night on two occasions because I’m just so exhausted to remember ( and the RLS is creeping ) 2nd night. Mild sensations tonight not as bad as last night, so maybe the iron was doing the trick? I don’t know, maybe my body just can’t function anymore. I’m taking the iron too.

Thank you Hidden . like always. Wishing you all the best

[Hidden in reply to Freegaza786]

Yes, I should have explained the paradoxical effect more. So with Mirtazapine and Trazodone, the lower the dose the more sedating and anti-anxiety are those meds. The higher you go they become energizing and more of an anti-depressant. But for the RLS you could probably take 7.5mg of the mirtazapine on restless nights. That will most definitely trigger RLS at that amount. 3mg or less is still incredibly sedating and less likely to trigger RLS especially if you take it with the iron. At higher doses the iron is just whistling in the wind...meaning the storm left by the mirtazapine.

The Klonopin is the great fail safe. There are only two drugs I have ever found to do what they're supposed to do without side effects. Klonopin and the beta blocker I take. I'm the canary in the coal mine. My system is overly sensitive to chemicals. Even the trazodone at that extremely low dose will give me a mild headache in the morning. 50mg of trazodone is kind of high to begin with...at least for someone like me. Don't suffer, take a tramadol if you can't sleep then call your psychiatrist in the morning.

[Freegaza786 in reply to Hidden]

I took the 50mg trazodone last night around 11:30pm and around 12:30am I must have fell asleep on the sofa. (Great!)I was woken up around 3:30am with really bad sensations up both my calves to my thighs, to the point I could actually see the ‘worms’ crawling up my left thigh. Stretched and walked around and an hour later the sensations went. (Great!) but it was now 5am and I was fully awake. I also forgot to take the iron again. While I was asleep, my partner told me my legs were jerking every so often ( this has not happened before).

I truly believe not having the iron every 2nd night on past 3 occasions has triggered these sensations to come back. The only other change has been the trazodone and more personal stress.

It certainly something to think about.

After daytime symptoms being non-existent for a while. Today unfortunately they are creeping back.

I will continue with the trazodone but restart the iron and see if that has any positive affect.

If it does, then in my case taking iron every other night has been preventing the RLS especially the bad two nights I’ve had with the sensations.

Trial and error. And if the iron doesn’t stop the sensations, il knock the trazodone after a few days and see if that helps.

Onwards and upwards.

[Hidden in reply to Freegaza786]

That is great. I like falling asleep in other parts of the house. Then not knowing where I am or who I am. Think about taking the iron every night. I rarely forget because the RLS reminds me. The ferrous bisglycinate I truly believe helps me fall asleep in general.

[Nanpat in reply to Freegaza786]

If your GP referred you to the Neurologist, tell him how disappointed you were with them and insist on another referral.You pay them so they work for you……remember 😊

[Freegaza786 in reply to Nanpat]

Nanpat thank you.

[m1946 in reply to Doversoul]

I too can recommend Dr Murphy of Guys Sleeping Clinic. The first medical professional to understand RLS!!!

[SueJohnson]

I would NOT try to manage it yourself, but like Doversoul would ask for a referral to another neurologist, or if you feel your GP is open to learn, refer her to the Mayo Clinic Updated Algorithm on RLS (google it). Looking over your previous posts on pregabalin, it sounds like you started taking 50 mg every day on day 11 and 12 but only took it after symptoms appeared - correct me if I am wrong - and then found symptoms increased after taking it on the 12th day, so you stopped and found you had no symptoms on the next 2 days. Needless to say, you never really gave it a chance as you need at least 3 weeks of every day taking it 1 to 2 hours before bed for it to be effective. And 50 mg is basically a starting dose. Most people require much more for it to prevent symptoms. That being said I congratulate you on finding a regime without medication that works for you with very few nighttime symptoms. However if you find it getting worse in the future, don't be afraid of taking pregabalin the correct way. The fact that your symptoms increased after taking it 1 day (pregabalin does NOT increase symptoms) and disappeared without it the next 2 days doesn't really mean anything.

[Freegaza786 in reply to SueJohnson]

SueJohnson thank you for your reply.

I sent the updated Mayo Clinic algorithm on RLS to the neurologist, however he said he didn’t have a chance to look at it.

Sorry for saying I’m going to manage it all by myself, I was armed and ready with all the information yet after the recent consultation I was left feeling the information I had was worthless.

I understand what you say about pregablin and in hindsight maybe should have persisted with taking it over a long period to feel the full effect. I have just been so fixated on the no medication approach. Plus having already been on pregablin 450mg previously for a long period for anxiety (which didn’t help).

What you said “ However if you find it getting worse in the future, don't be afraid of taking pregabalin the correct way. “ <<< certainly something to consider. Thank you.

For now the little and no medication approach is working, don’t know how long for but it is. The occasional tramadol too.

Thank you once agin for your reply

[SueJohnson in reply to Freegaza786]

I would have your GP test for your ferritin level. Just stop the iron 12 hours before.

[Hidden]

MY suggestion would be to disregard their advice and keep doing what you’re doing. As far as the trazodone goes, I would take half a pill one night when you have insomnia. If it doesn’t help you fall asleep or at least have less anxiety then put it in your collection of orphan drugs. Because of the insomnia it may not seem like it , but as an outsider it seems like you’ve come pretty far pretty fast with your RLS, especially since you’re an ex-DAer. When my son was little he loved that movie called Finding Nemo and there was a line that one fish would chant “just keep swimming, just keep swimming.”

[Freegaza786 in reply to Hidden]

Hidden I wouldn’t have come pretty far pretty fast with the RLS without your encouragement and advice. Thinking outside the box. Fingers crossed in a few weeks I think I will have tamed this beast for years to come. (Which is what should have happened when I first started having RLS, instead was put on the dreaded DA)

My neurologist did agree with one thing, medication doesn’t seem to agree with me and in long term makes RLS worse ( so why is he saying take tramadol x 3 daily 🤦‍♂️)

Let me take this opportunity to sincerely thank you again and all others on this forum. Amazing folk.

[s_gc]

Really sorry to hear the experience you had with the neurologist. I would definitely try a second opinion with one that has experience of patients with RLS. However if you are currently managing your symptoms without medication, I would also say keep going.

I have been doing the same for the last 7 years, managing without medication ever. On two occasions the symptoms were so bad I had to see a GP urgently: the first one was useless because she had no clue (handed me anti-histamine sleeping tablets which I didn't take), the second one knew about the condition and just handed me a prescription for one of the DAs saying I should take it for life with no other explanations or discussion about side effects (never bought the prescription) but the third one (incidently the youngest of all) knew exactly what it was all about. The second time my symptoms were really bad last year I got to see a neurologist who then referred me to a haemotologist for extensive tests.

The outcomes of the GP and specialists consultations were exactly the same: increase the iron intake which on both occasions relieved the symptoms significantly but not eliminating them entirely.

However being annoyed at the sleep interruption (but not having insomnia, just being awaken by symptoms) I have discussed infusion with my GP. In the meantime I had been in fact experiencing other symptoms seemingly non related to RLS which affected other parts of my legs at night and this has now taken over so I am trying to get this sorted first. I have almost no more RLS symptoms in the meantime (or hardly feel anything, but aware this might come back once the other condition gets sorted).

[Freegaza786 in reply to s_gc]

s_gc thank you for your reply. I have been in tears most the night because I’m just tired. Exhausted. And to have that feedback from the neurologist was just a slap in the face. I feel absolutely helpless. I just know I’ve got to keep going and doing what I’m doing but it’s damn hard.

I couldn’t keep to my nightly fast last night and stuffed my face with everything as I’m so depressed and guess what. The sensations up my calves and thighs were actually like worms travelling up my body. Absolutely awful. Maybe that’s the consequences of stuffing my face.

Thank you sorry for talking on

[Munroist]

I’m afraid I can’t advise on insomnia, but you seem to be doing a great job on your RLS and the results are what we would hope for if you come off DA’s and look after your iron. I would definitely ask your GP for a blood test every now and then maybe six monthly or yearly so you know where your iron levels are and maybe a referral to a second neurologist for insomnia but I can’t see that they could offer you anything for your RLS that you aren’t doing already. If you can avoid it I would stay away from pregabalin, I was on it for a year and it did a job and wasn’t too bad but I am definitely happier without it. Ultimately you are the one responsible for your health and you can decide whether or not to take their advice and to me it sounds like you’ve got the RLS under control and the medical profession should be grateful to you for managing your own affairs and not taking unnecessary medications which would have made things worse.

[Freegaza786 in reply to Munroist]

Munroist thank you for your reply.

Somebody advised on here to ask my psychiatrist for trazodone for my insomnia which I did. And she was happy to prescribe it after a bit of persuading. I took 50mg last night and i can’t say it helped atall. Apart from making me feel a bit drunk and groggy. And when I was knocking off at 5am, the kids were awake at 7am, so now just feel really hungover.

I’ve been so focused on getting relief with my RLS, that in the process I think I’ve worsened my insomnia by coming off all meds.

I just physically havnt got the energy anymore, even while typing this I’ve got tears running down my face because I just want this suffering to end.

I just want to sleep! Is that so bad. I havnt been suicidal for a while, and I think the RLS has kept my mind focused elsewhere. And now that getting resolved and I’m still struggling to sleep. I’m honestly contemplating to end my life because I havnt got the strength I just havnt.

Sorry for blabbing on I just really exhausted, can’t stop crying. Sorry

[Munroist]

It can look pretty bad at times and you are not alone here but I think you've done really well in the face of inadequate help from the medical profession and when you've had a bit of time to take some deep breaths I don't think you will really want to go back on the meds full time especially DAs which in the long run cause worse problems for many people. That doesn't mean that you can't use them occasionally to get some immediate relief. You do need to sleep to function so all I can suggest in the short term is occasionally using the DA for one-off relief if it still works for you, try to get sleep in the day(if possible with kids?), but even 3 or 4 hours solid sleep midday without the RLS would help. I have no experience with non-RLS insomnia but others on the forum have and there may be options with Cannabis oil or other things. I recall someone saying Valerian helped with sleep a while back. If it's anxiety related then pregabalin may be an option and you can start and stop it without too much issue if you build up and reduce carefully over a few weeks - it helped me get through a patch of anxiety and back issues. The NHS is there to help even if it's hard work so I'd go back to the GP and make sure they know how little sleep you are getting and how seriously it affects you, just say you feel suicidal, and remember it's your choice so you don't have to take the first thing they suggest, it has to work for you. I think you are right to acknowledge how you are feeling and that you need and deserve more help from your GP and NHS. None of us can do everything alone.

[Freegaza786 in reply to Munroist]

Munroist Thank you for your kind words.

I’m going to make myself a tea, and maybe go for a walk to compose myself. Emotions are running really high, I definitely think I need a breather.

Apologies for getting upset and just burdening everyone with feelings.

Today is a dark day, but I will get through it! Thank you

[Cowbsky]

_hi,_ yes, try to manage it by yourself, would be my modest opinion and experience. No solution on hands of MD's; they are only necessary for the prescritpions I suggest to him, in my case. Luckily, my geriatric MD is very open mind and do this for me.

_ however, in every consult annual consult or 6-month, I am able to flood him with tons of data, information, and insights from medical literature, my 4-year dataset from the Bilevel CPAP, and long-ago daily journal;

all the best and good luck

[Freegaza786 in reply to Cowbsky]

Cowbsky thank you.

Wishing you all best

[Guitarpickin]

Hi Freegaza786, my heart goes out to you. Decades before I developed RLS and PLMS, I had severe insomnia (the kind where I always had difficulty sleeping and occasionally wouldn’t sleep for many days in a row-to the point of delirium) and can identify with your exhaustion and frustration. From the sound of it, right now, you just need one full night of sleep before you can think bigger picture thoughts-or before you can function well enough to think rationally about anything. Do you have a partner that helps with the kids? Or is it all you? Because if someone else is available to help, I recommend getting something stronger for sleep-not to take every night (because what really needs to happen for the insomnia is for you to work on your sleep hygiene—which will likely require a lot of changes in your lifestyle..just until you get it sorted)…but a strong pill to take when things get desperate, as they seem to be now. We are all different, but for me, the strong pills that that knocked me out when nothing else could were either ambien (10 mg-and not the generic zolpidem) or flexeril (10 mg). But sleeping for a night with one of those would require you to have 8-10 hours to sleep and I don’t know if your life (with small children) allows for it. But beyond that, I recommend cutting all forms of caffeine out of your life. That change, combined with no TV, computer, or phone time after 7:00 pm, probably proved the most instrumental in learning to manage insomnia, for me. I no longer have to avoid either thing…but when my insomnia was out of control, making major lifestyle changes proved critical to getting sleep without medication. I’m really sorry about what you are going through and I hope things improve very soon. Hang in there. We’re thinking of you.

[Freegaza786 in reply to Guitarpickin]

Guitarpickin thank you so much for taking the time out to reply.

It’s so reassuring to know people know what I am going through.

I know with whats going on around the world, that I’m lucky compared to most with my life. Am I being selfish? I just want to sleep. Is that so bad. Never thought sleep deprivation would turn me into such a emotional wreck.

I do have a partner who has her own difficulties (being diagnosed with cancer) has had two operations and radiotherapy. She is very supportive and does her upmost. I just have to muck in and give her a hand. However getting something stronger to sleep shouldn’t be an issue over a 1-2 days as my eldest mucks in too in helping with the kids.

I’ve been prescribed trazodone which I took last night, but didn’t help at all. Just made me feel groggy / drunk. And by the time I fell asleep I was awake 2hours later with the kids.

Is there anything stronger then trazodone? I’ve had zopiclone before but heard that worsens RLS.

I agree long term to fix this insomnia is going require big lifestyle changes. Already cut caffeine out and TV is always off in the evening.

I feel lot more composed now since this morning.

Thank you every one for your support. I don’t think I would have got through today without everyone’s positive words.

Amazing bunch of people on here.

Here’s to another all nighter

[Guitarpickin in reply to Freegaza786]

I hope by the time you read this you will have had more than 2 hours of sleep.

First, I want to be clear I am no doctor and I don’t know much about current best treatments for insomnia. But I am a professional insomniac, so I know a bit. Unfortunately, trazodone is not a drug I have used. According to google it seems to work very differently from ambien and flexeril, so if trazodone is ineffective, ambien may be worth a try. From what I can tell, both ambien and flexeril are stronger than trazodone for sleep (based purely on google-whatever that is worth). I should also tell you flexeril is NOT a drug that is supposed to be used for insomnia, and long term use is allegedly dangerous. It is a muscle relaxer usually used for muscle spasms associated with a spinal injury. I first learned about it from a coworker who gave me some (to help me sleep when my insomnia was about the way yours is now) because he was unable to use them himself. He was a single dad and said the flexeril completely knocked him out, so he didn’t dare use them. I doubt any physician in their right mind would give you a prescription for flexeril to sleep. But ambien should be easy to come by. According to google, ambien doesn’t aggravate RLS.

It’s good you have already cut out caffeine and don’t watch TV late into the evening. But even more important is avoiding electronic screens because of the light they emit. I’m sorry about all the stress in your life-that obviously makes sleep even more elusive. Not to mention dealing with RLS on top of insomnia. But you will get through this. Hopefully sooner than later you’ll break the insomnia cycle and reset your biological clock. Fingers crossed the trazodone worked better for you last night! Especially if you were able to try a smaller amount as LonePine suggested. Good luck. You can do it.

[Freegaza786 in reply to Guitarpickin]

Guitarpickin i managed to get around 3-4 hours last night

I took the 50mg trazodone last night around 11:30pm and around 12:30am I must have fell asleep on the sofa. (Great!)I was woken up around 3:30am with really bad sensations up both my calves to my thighs, to the point I could actually see the ‘worms’ crawling up my left thigh. Stretched and walked around and an hour later the sensations went. (Great!) but it was now 5am and I was fully awake. I also forgot to take the iron again. While I was asleep, my partner told me my legs were jerking every so often ( this has not happened before).

I truly believe not having the iron every 2nd night on past 3 occasions has triggered these sensations to come back. The only other change has been the trazodone and more personal stress.

It certainly something to think about.

After daytime symptoms being non-existent for a while. Today unfortunately they are creeping back.

I will continue with the trazodone but restart the iron and see if that has any positive affect.

If it does, then in my case taking iron every other night has been preventing the RLS especially the bad two nights I’ve had with the sensations.

Trial and error. And if the iron doesn’t stop the sensations, il knock the trazodone after a few days and see if that helps.

I feel so uplifted by the support and kinds words by everyone on here, ashamed to think I got so low yesterday to the point of no return.

I can do this. Thank you.

And thank you to everyone else who just got me through a really difficult And emotional day yesterday.

Time to get back to strict regime and make sure I don’t miss any more iron.

Will update folk in weeks to come.

Thank you all again. Words can describe how thankful I am to everyone

[Freegaza786 in reply to Freegaza786]

Guitarpickin And I’ve been so focused on being RLS free that all my focus has been on that rather then my sleep hygiene and insomnia.

It’s not going to happen overnight, but I believe if I be proactive like I have been with the RLS then eventually the insomnia will ease overtime.

Wishing you all the best. Tc and thank you once again

[Guitarpickin in reply to Freegaza786]

Please don’t ever apologize for telling us how you feel. And never feel ashamed for your feelings. Sleep deprivation is no joke! Everyone on this site can understand and identify with the struggle. So glad you got a bit more sleep last night! Please do report back as you try to figure out what works best for you. In the meantime I’m thinking of you and rooting for you (and your partner) and wishing good health to you both.

[BBMBRB]

i would carry on doing what you know is helping

[BoldMove]

You might try an Osteopath. They are MDs who are very open to natural therapies.

[s_gc]

Best of best wishes Freegaza786, I totally empathise with how low you got. Hopefully some of the advice given here will work for you (and do share your feelings with your GP too) and I hope to hear back from you when you have got some better sleep.