I am a 35 YO female, and I’ve been suffering from migraine for the past 3 years. The intensity and frequency of migraine has increased throughout the years going from 1 debilitating attack per month to 6-8 per month.Last august 2023, I had an increase in attacks and that’s when the supposedly RLS symptoms started.
It all started with weird tingling in my feet, with twitches in my calves and occasionally tingling in my fingers/hands as well. The sensations are 24/7 but get worse at around 4-5 pm with occasional burning sensations in my toes. When I move, I don’t feel the tingling but what is weird is that I don’t have an urge to move my legs.
GPs have been useless, one gave me a referral to a neurologist but the appointment with the NHS was too far out, so I took matters in my own hands and I saw a neurologist privately last October/November. He ordered a brain MRI (all good there thankfully) and some blood tests. In the blood tests, I had my B12 tested 440 ng/L (160.0-800.0] and Serum ferritin level mine was 118 last november 2023. I am not diabetic and I don't have any thyroid dysfunction.
So the private neurologist diagnosed me with RLS and prescribed me gabapentin (as he said he might also help with migraine prevention). He also said that RLS can be a migraine comorbidity but I haven’t found a lot of articles or research on it. I started gabapentin 3 weeks ago, I am currently on 600 mg and slowly increasing to reach 900 mg. I have a demanding day job and the gabapentin is making me very drowsy in the morning, so I am increasing slowly.
I still have symptoms for the majority of the day but I can see a slight improvement with gabapentin. In terms of supplements I am taking magnesium glycinate in the morning, vit b12, vit b6, folate and iron bisglycinate in the evening with vit c, so far I haven’t seen the benefit for the magnesium/iron. Apart from gabapentin, I am not taking any other medications regularly apart from rimagepant as an acute medication to try to stop a migraine attack.The thing is, I am not 100 % convinced of the RLS diagnosis. The sensory creeping/crawling/burning/tingling symptoms are there, but since the beginning I have had them also during the day and not only in the evening. I don’t feel an urge to move my legs, even thou movement helps relieve symptoms. I can sleep mostly every night (apart from occasional insomnia) and the RLS symptoms don’t wake me up cause as I was saying I don’t feel the urge to move my legs. I am however in a lot of discomfort daily with the sensory symptoms cause they are 24/7. I’ve thought about peripheral neuropathy but as well there not all my symptom fit the diagnosis. I am unsure if asking for another opinion to a different neurologist, but going private is quite pricey. I was wondering what this community thinks. Appreciate any reply in advance!
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Ariel88
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The only way to diagnose RLS is by this which you are probably aware:
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
From your description it doesn't sound like RLS to me.
One other way to confirm it is RLS is to take a dopamine agonist like ropinirole or pramipexole for a few days. If that makes a difference it is likely RLS, however DO NOT CONTINUE taking them. There is a huge temptation to do so since they may completely take care of your symptoms, but Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatments for RLS gabapentin and pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
The URGE to move is the most important diagnostic tool.You don't have that. Also, RLS follows the dopamine cycle and is worst in the evening and during the night, causing sleep deprivation. You don't have that either.
However, it does sound like peripheral neuropathy and gabapentin helps to treat that.
Presumably you take gabapentin in the day because that's when you experience symptoms. Drowsiness is common, but does tend to settle after a few months.
I agree with SueJohnson. It just doesn't fit the RLS diagnosis.
The drug you are taking for migraine is relatively new, so detailed side effects may not be fully reported or known.
It is possible that the migraine drug might be the cause of these tremors, tingling etc.
On the gabapentin: since you need more than 600 mg, take the 300 mg 2 hours before the 600 mg as it is not as well absorbed above 600 mg. If you later need more than 1200 mg take the extra 2 hours before that. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. As Madlegs1 said if you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason .
Could it be a magnesium deficiency? You say that you take magnesium daily, however perhaps you just started recently or don't take enough? Just a thought because your symptoms sound like it to me and many, many people are deficient. I read this National Library of Medicine review recently (link below) and I found it very interesting. It would explain your increasing frequency of migraines, and some of the other symptoms. It's a long read, but you could skim to the headings of interest. Please ignore the main heading of the review, it's about so much more than just cardiovascular disease. I hope you feel better soon! Jen
I agree with others that it doesn’t sound like RLS, mainly because of no urge to move, all day symptoms peaking around 5pm, and acceptable ferritin (although not high for RLS). It sounds more like nerve excitation or neuropathy. I had a bad episode of sciatica and back pain after a slipped disc which sent my nerves into overdrive and even after the back improved the nerves stayed in a state of excitation and gave me sensations similar to yours. The Dr agreed to pregabalin to reduce the symptoms which it did to an moderate level but they were still there, just less so and I didn’t care as much because of the anti anxiety and intoxicating effects of the drug. In the end I decided to live with the sensations because I could see that my back was OK and they weren’t signs of damage or real pain and I came off pregabalin. Over the intervening 3 years things gradually settled, I learned to pace myself better, meditate, exercise within my limits and the sensations gradually reduced although have never gone completely. If you google “central sensitisation” or “central nervous sensitivity” you should find a few articles on it. I wonder whether the distress of the repeated migraines has fired your nerves up?
Hello everyone! Sorry for the late reply and thank you so much for taking the time this community is so kind.
I agree with you, I also don't think it's RLS. I think the neurologist didn't really listen to me (do they ever?) when I mentioned I do not have an urge to move my legs and I can sleep at night, despite being uncomfortable.
I think that the connection was made by drs, cause RLS tend to be a Migraine comorbity and they are apparently connected with disfunction of the dopaminergic system.
Even if it could be possible, I don't think that it's a side effect of the Rimagepant, simply because I don't take it as a preventative, so I don't take it every day.
What Munroist is saying does really resonate with me thou. I feel more like nerve excitation or neuropathy due to migraine.
Just to confirm, It'd be willing to try a dopamine agonist like ropinirole or pramipexole for a few days. Does it work straight away, or do you have to built up like with gabapentin? Can I discontinue it just after a couple of days?
Hello, Ariel88. I am 74 years old and have had RLS and migraine since I was 12 years old. It has been a continuous journey of trying to understand and treat both, individually and combined. Discovering this site less than a year ago has been as helpful as decades of doctors' appointments and my own research. I agree with everything included in the replies to you as well as your reflections. I have tried many treatments for migraine and currently take 3 prescription meds that are working better than anything in the past. Like migraine, RLS comes and goes but through the wise advice from this site, I now have it more under control. It takes a constant effort to manage drugs and their interactions. Many factors can interfere and take patience and time to address. I know I have RLS and I know that I have migraine. I have learned significant facts about both. Recently, I have decided that the tingling, burning and other symptoms not typical of either migraine or RLS are most likely the result of multiple causes and many years of nerve damage. Although I have shared this with several in my medical community, I can tell it is being met with skepticism. Currently, I rely on self management based on input and feedback from medical as well as knowledgeable and experienced resources to obtain both advice and empathy while on this sometimes difficult journey. The incredible people on this site have enabled me to remain mostly rational, or at least regain some rational thought when things go haywire. They also remind me of how fortunate I am and how much worse things could be. They make me want to help others as they have helped me. Listen to them and to your own instincts and experiences. This is BarnGir1 wishing you better health.
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this community is so kind.
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