I seem to have posted quite a lot about my experiences with drugs recently. I seem to be on a downward spiral and a learning curve at the same time - but not getting much relief from drugs for one reason or another.
My last post was about Propranolol and I posted here because I was concerned about its effect on Thyroid hormones.
This sparked an interesting discussion but I needn’t have worried as I’ve only taken it for five days and have had to throw in the towel.
I was prescribed it by the good doctor for migraine, anxiety and high BP. 80 mg SR (Sustained Release aka ER or LA).
I took the first on Monday bedtime (it’s one a day) and the next day had intense nausea, migraine / headache from hell, indigestion, stomach ache and diarrhoea and, to my chagrin, confusion. Made no connection with Propranalol and just assumed that migraine was having a field day. BP was going down steadily. HR about 50 all day
Symptoms became intolerable and yesterday after reading the PIL for the first time I spoke to the very knowledgeable Clinical Pharmacist. He told me to stop it and gave me an alternative for the hypertension.
I told him I was surprised at this reaction as I took it quite successfully at same dose 20 years ago for migraine prophylaxis. He then asked me if I could remember whether or not it was generic. As it happens, I could. My brain retains useless information and jettisons quite important stuff like what day of the week is it.
I told him it was Inderal, a well known ‘brand’ no longer prescribed. He sighed deeply and I learned that therein lies the problem. Apparently some generic SR formulations tend to ‘dump’ quite large amounts of the drug quite soon after taking. I’m sure he described this scientifically but I can’t remember much about that.
I then remembered that there are two “must not be prescribed” drugs in my records. Both of these are generic SR formulations - Nitrofurantoin and Oxybutenin - and both cause me to have distressing confusion. Listed as a rare side effect.
Hard to believe that they can manufacture stuff like this and that it can be prescribed with impunity - but NDT is frowned on because it’s ‘inconsistent’ and ‘unstable’.
As a fellow VM sufferer I've been following your posts with interest. Have you thought about what migraine preventative to try next?
I had a similar experience with both Amytriptyline and Nortriptyline. I took both at different times years ago, I was on Amytriptyline for a few years for Fibromyalgia, for pain and sleep issues. On a much higher dose than is normally prescribed for migraine. Yet when I tried them last year I had to quit, both gave me the shakes, headaches and a racing heartbeat.
My doctor tried insisting I was over medicated on Levo but I knew it was the drugs and hey presto as soon as I stopped them the symptoms went away. I'm very drug sensitive and Propranolol aggravated my asthma.
If I were you I would ask to see a neurologist as they are the migraine experts and can prescribe medications not available to GP's.
Just to add most GP's I've spoken to freely admit VM is specialist and outside their area of expertise, and that there are only 3 migraine preventatives they can prescribe, Propranolol, Amytriptyline/Nortriptyline and Topirmate. Anything else needs to come from a Neuro.
I’m lying in bed with head pounding wondering what to do next about the wretched migraine. I know that when I get up, I’ll wobble about and my speech is already giving up.
I’ve seen a neurologist who gave me the dx. He prescribed Ami which you may remember turned me into a monster. Then changed it to Pregablin. No effect so it too was stopped.
What next?
Currently take Gabapentin for PN but it’s not touching the migraine.
High cortisol is a factor I think - hence hypertension
I tried 5 drugs before I found Venlafaxine which has worked well for me. Its horrible as you have to give each one a fair go before sadly conceding its not for you. Some people seem to get lucky and find relief on their first try but that wasn't my experience.
Can you ask the Neuro for advice? I know Candestarten, a BP drug is now being used for migraines. I couldnt get on with it as it dropped my BP too low but I dont have high blood pressure.
Other things members on my VM forum say have helped are strictly no caffeine, chocolate, Chinese food as these can aggravate migraine. Some avoid booze as well. High dose vitamin B2 can help and magnesium supplements as migraine is linked with low magnesium. I've got to be honest and say I tried all of the above but found no success.
Mine started last April, so 18 months for me. I had what I thought was a normal migraine the day before, I get the classic migraine aura followed by the headache. I'd had migraines since I was a teenager but they got a lot more frequent after I was diagnosed as hypo.
The day after the migraine I was walking home and started to feel a bit off, like I was walking on a trampoline. I'd popped into the supermarket and found it really hideously uncomfortable. I thought it was perhaps a remnant of the migraine as my husband is a migraine sufferer as well and has had dizziness during a migraine.
Sadly my balance issues never resolved and afer several trips to the GP and several medication attempts later I saw the Neurologist and also an ENT consultant who both diagnosed VM. So here we are.
Sometimes I have trouble believing it as I certainly didnt experience chronic stress before it happened but it seems as though the migraine I had did something to my brain as they are very traumatic.
So I'm going with it and Venlafaxine has certainly helped. My tolerance for supermarkets has increased lol. I can tolerate fast moving screens and bright lights much better now. My migraines have greatly decreased. My balance issues come and go but whereas before they were 24/7 now they are more noticeable when I'm tired or at the end of the day.
I'm under the care of an NHS Vestibular Physiotherapist who gives me execises to improve tolerance for visual and motion stimuli and to improve balance.
I dont know if I've mentioned the specialist forum I use for migraine, specifically VM. Its been a Godsend for me and an absolute mine of information. You dont have to join and can just read the posts, people discuss medications as well as alternative therapies they've tried. Its called Mvertigo.org.
I just hope I can pass on a bit of my own experience. I wouldnt wish VM on anyone. Out of all my conditions I've found this one to be the worst, the most disabling and the one which has most adversely affected my mental health.
I too find that the effect of VM on mental health is difficult to manage. It’s a Catch 22 really. Mental health issues have an impact on neurological issues.
Interestingly the areas in the brain that control anxiety and dizziness are next to each other so if you are anxious you feel more dizzy as panic attack sufferers can testify. And feeling dizzy makes you more anxious so as you say they feed into each other. So its no surprise that many VM preventatives are antidepressants as these help reduce anxiety levels.
I was prescribed Clonazepam, on a low dose, when my VM was at its worst. Its a benzodiazepine. And not recommended for long term use, however it was a miracle drug for me. Its not only good for anxiety but its a vestibular suppressant and can be really helpful to calm down the balance problems until you find a migraine preventative. It got rid of my symptoms almost completely.
It gave me good days and broke the cycle of hopelessness.
I still take one occasionally if my dizziness is bad but try to be sparing in using them. Benzos get a bad press due to addiction and misuse issues but sometimes you need them to help you function and in the low dose I take, 0.5mg it shouldn't be an issue. I certainly never became dependent on them.
Im a bit perplexed about why Benzos get a bad press because of addiction issues. It’s certainly not true that you inevitably have to keep having dose increases to achieve same effect.
It’s similarly untrue that anti depressants are not addictive. Tell that the millions of people who suffer dreadful discontinuation syndrome even after quite short courses of ADs.
Yes I find the whoha about certain drugs very odd. There are lots of drugs that are very addictive and the withdrawal symptoms are horrendous. I was on Morphine for years due to Fibro pain, until I concluded it wasn't helping and weaned myself off of it.
0.5mg Clonazepam once daily gave me excellent control and it has a long half life so I never needed anymore. I often go for days not needing it and have never felt any symptoms.
Really interesting to read your post about benzos. I’m taking when needed American Xanax that I have prescribed privately by a pain consultant. I have bouts of facial pain & it’s the only thing that has stopped it. I haven’t found it addictive & can go days without it. I was prescribed Lamotragine, Gabapentin, Pregabalin & others without any success.
My husband happened to visit an osteopath who had worked in the States for years. He prescribed Diazapam for my husband’s back pain caused by muscle spasms. It’s generally not used like that in the UK. I tried a few & it reduced my pain a little. Then I realised that we had Xanax in the cupboard prescribed by the vet for my dog’s house moving anxiety. Tried one and total relief in 20 minutes! Amazed. Unfortunately it’s banned for use in the NHS so had to go private.
I’ve learnt to use it as sparingly but it has helped hugely in making it a more normal life possible. Shame it’s got such a bad reputation. The other drugs gave me horrible side effects. Lamotragine particularly has horrendous side effects, your skin can fall off & you die. I was terrified of it but desperate so took it.
GPs are terrified of the stuff now. I was prescribed 2mg diazepam, but only 'allowed' one box every two months because it was addicitve. After a few months it was deprescribed for that same reason. I've never personally found it addictive, but maybe it depends on the indvidual and their circumstances. A bit like alcohol use perhaps.
In the past I tried everything that seemed to be available. I bought Inderal in Saudi Arabia over the counter by the pharmacist for migraine. It was about £7 per tablet (don’t quote me). Instinctively I did not take it. When I got back my NHS cardiologist (the one who had my subclinical hypothyroid results in her file which she ignored) told me that it was good I did not take it as it could have killed me. A few years later I went to a chiropractor (can’t remember what for - general health thing, getting very stiff etc, also unknown to me, hypothyroidism) and after a couple of sessions noticed my migraines or cluster headaches or whatever the hell they were, stopped. I have rarely had a headache since.
Thank you. I know I’m optimally medicated but I think some physical therapy is overdue. Good to hear of your success with chiropractor.
I’ve just been reading posts on the VM forum which SS kindly linked me to. There’s an interesting post there about a physical therapist working with the Atlas Bone to great effect.
Even optimally medicated some damage (I think) can become more, or less, permanent without some physical adjustments to the body line. We make adjustments to accommodate chronic pain in particular, not realising that it can create knock on effects elsewhere. Sometimes these things are released without our knowledge when improvements are made but not always. It’s become habitual. We are mostly unaware of this. I presently have a hip thing which I have had for donkeys. I am definitely not optimally medicated, however and until I am I don’t want to further damage, possibly the alignment of the nerves affected by being undiagnosed hypothyroid for a very long time. I am hopeful it can still be treatable. It’s a matter of judgement. We know our own bodies a lot better than anyone but particularly mainstream trained doctors. Atlas Bone never heard of, will check that out.
Just found this very helpful info about Atlas Bone. Ticks all my boxes This bone so called after Atlas who, in mythology, carried the weight of the heavens on his shoulders.
I often say to OH that my head feels too heavy for my body. He makes really helpful comments like:
I don’t think your brain is heavy enough to cause that 😤
Just a heads up ( excuse the pun) you arent hypermobile are you? I have Ehlers Danlos, a genetic connective tissue disorder which among other things makes me very bendy. My vestibular Physio is convinced that my neck being so mobile is responsible for at least some of my dizziness.
I too have felt my head is too heavy and I get a lot of pressure in the base of my skull. Its known as cervicogenic dizziness. It can be treated by her but because of my EDS I've got to see a Rheumatology Physio first to check its safe to do so.
Have woken up today feeling much better but have what I call ‘Chariots of Fire’. My body feels very stiff and slow and as though it’s moving in slow motion. Like the athletes in the music clip from the film. Slow running. So hard to describe but for me it’s a prodrome symptom.
OH is the most patient man on earth. He knows when Chariots of Fire is on the way as I just stand completely still and am ‘out of it’ for a few seconds.
This is the craziest condition I’ve ever had. Never a dull moment. 😉
Cervicogenic dizziness can also be caused by arthritis in the neck, trauma like whiplash, if you have cervical stenosis, narrowing of the neck column due to age related wear and tear where the gap in which the spinal column passes through becomes narrowed and presses on the nerves, blood vessels.
Indeed not. I've also considered seeing a chiropractor to see if it is a neck issue as I feel the Venlafaxine has helped with a lot of my VM problems but I'm still experiencing transient balance issues, feeling a bit drunk, neck stiffness, pain and pressure.
Knowing the NHS I'm not holding my breath for the Rheumy Physio to be in touch anytime soon. I've had 18 months of this nonsense and frankly I'm sick of it.
Right it looks pretty much like what a chiropractor would do. It’s very interesting indeed. I have not seen a chiropractor in years but something as specific as this, sounds like it could help my pulsatile tinnitus. I have wondered if the two are related in some way migraine/tinnitus. Thank you I am going to discuss with a chiropractor.
On reading this, I’m just amazed at how many conditions are the result of this. I have pulsatile tinnitus too.
I think it’s time for me to start considering non pharmaceutical solutions.
I’m looking for a chiropractor in my area as I speak.
Thirty years ago I did consult a chiro and it was a strange experience. He was a bit aggressive and shouted at me that I had flat feet 🙈. He also made me walk around just in my knickers which I thought was rather odd. Then he did several cracking manoeuvres and dismissed me.
The next day, he phoned me at work. He asked how I was. Thankfully, he didn’t ask if I was wearing knickers 🙈. Anyway, I digress. I told him that I felt as though I’d been run over by a bus. He said I’d feel better tomorrow.
Remarkably, I did. I was pain free for a very long time.
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