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Ghormeh Sabzi

Strange leg sensations (tingling, burning)

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Anyone get anything like this? Started around the same time as many of my other symptoms. It feels like a permanent graze on my buttocks and upper thighs. Significantly worsened (i.e. becomes very painful) by putting pressure on the affected area for long periods, (e.g. sitting down) and reduced to almost nothing (eventually) but standing up and moving around for long periods.

Matches up somewhat with restless leg syndrome, but it's mostly the top of my legs / buttocks. RLS usually affects the lower legs. Also, RSL is more often present at night, whereas I can wake up and immediately feel these sensations.

Perhaps it's some form of neuropathy.

Various tests have now shown it not to be sciatica, neuropathy or any kind of disease that affects the nerves. It's a mystery.

Edited by Ghormeh Sabzi
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Anyone get anything like this? Started around the same time as many of my other symptoms.

Matches up somewhat with restless leg syndrome, but it's mostly the top of my legs / ass cheeks (not too sure of the technical term lol). RLS usually affects the lower legs. Also, RSL is more often present at night, whereas I can wake up and immediately feel these sensations.

It's fairly annoying. I get it daily.

Also get tingling on my nose sometimes.

Perhaps it's some form of neuropathy.

That's just another symptom of Restless legs. Feelings of burning and tingling are rather common in people with RLS.

Hope that helps.

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RLS comes in many forms... can come in the day and can actually affect various parts of the body. I'm almost certain it is a form of RLS.

Be careful with meds as alot of them make it worse, even ones specific for RLS.

Are you on any other meds than the gabapentin?

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Yes, still present, and worsening.

I have some gabapentin for the pain, but after three days (up to 900mg) it unfortuntely does not seem to be doing much.

Do you find Gabapentin is affecting your visuals at all? Particularly if you have 'movement of stationary objects' a little worse?

RLS is considered a dopamine/iron disorder

Curious what they use to treat it (Dopamine agonists, Gabapentin, Opiods, Benzos, Antiseizure meds) and parallels that some report with HPPD.

Especially like off-label treatments: Marijuana and Gin-and-Tonic :P

http://en.wikipedia....s_legs_syndrome :

Pharmaceuticals:

For those whose RLS disrupts or prevents sleep or regular daily activities, medication may be required. Many doctors currently use, and the Mayo Clinic algorithm includes,[44] medication from four categories[citation needed]

  1. Dopamine agonists such as ropinirole, pramipexole, carbidopa/levodopa or pergolide. Ropinirole (Requip) was first approved In 2005 by the US Food and Drug Administration (FDA) to treat moderate to severe Restless Legs Syndrome. The drug was first approved for Parkinson's disease in 1997. Pramipexole (Mirapex, Sifrol, Mirapexen in the EU) received a positive recommendation by the EU Scientific Committee in February 2006. The FDA approved Mirapex for sale in the US in 2006. Rotigotine (Neupro), which is delivered by a transdermal patch was approved by the FDA in May 2007 for early stage Parkinson's disease; it is not yet approved for RLS in the US. The Neupro patch has been withdrawn from the US market due to problems with the medication delivery system. Rotigotine (Neupro), was approved for sale in the EU in 2007 for not only advanced stage Parkinson's disease but also for RLS. There are, however, issues with the use of dopamine agonists. Dopamine agonists have caused augmentation. This is a medical condition where the drug itself causes symptoms to increase in severity and/or occur earlier in the day. Dopamine agonists may also cause rebound, when symptoms increase as the drug wears off. In many cases, the longer dopamine agonists are used the higher the risk of augmentation and rebound as well as the severity of the symptoms. Also, a recent study indicated that dopamine agonists used in restless leg patients can lead to an increase in compulsive gambling.[52] Dopamine agonists are used as a treatment because RLS symptoms coincide with that of dopamine levels, with the majority of symptoms occurring late at night when dopamine levels are at their lowest.[citation needed]
  2. Gabapentin enacarbil, a non-dopaminergic treatment for moderate to severe primary RLS was approved by the FDA in April 2011.
  3. Opioids particularly methadone is a particularly effective treatment for the symptoms of severe RLS and does not have the negative side-effects (augmentation and rebounding) of dopamine agonist.[53]
  4. Benzodiazepines, such as diazepam, which often in addition to symptom relief assist in staying asleep and reducing awakenings from the movements
  5. Anticonvulsants, such as carbamazepine, help people who experience the RLS sensations as painful.[54]

Recently, several major pharmaceutical companies are reported to be marketing drugs without an explicit approval for RLS, which are "off-label" applications for drugs approved for other diseases. The Restless Legs Syndrome Foundation[55] received 44% of its $1.4 million in funding from these pharmaceutical groups.[56]

Cannabis may help people who experience RLS sensations to fall asleep much faster than normal, eliminate nausea caused from medication, and relieve pain. Although still restricted by the Federal Government, many states do consider RLS a medical condition for Medical Marijuana. (There is a pill form called Tetrahydrocannabinol, eliminating the primary health hazards such as smoking.)

Quinine is frequently used off label to treat RLS, but is not recommended by the FDA due to its risk of serious hematological side effects.[57]

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RLS comes in many forms... can come in the day and can actually affect various parts of the body. I'm almost certain it is a form of RLS.

Be careful with meds as alot of them make it worse, even ones specific for RLS.

I have previously done a bit of reading on RLS and based on that I don't believe I have it. But I could be wrong. There are four criteria:

These are:

  • an overwhelming urge to move your legs, usually with an uncomfortable sensation such as itching or tingling
  • symptoms occur or worsen when you are resting or inactive
  • symptoms are relieved by moving your legs or rubbing
  • the symptoms are worse during the evening or at night

I cannot give a confident yes answer to any of these questions, only a 'somewhat' answer at best. Additionally, putting pressure on my legs, i.e. sitting down for long periods, rather than mere resting, seems to considerably worsen the pain. I don't think this would happen if it were RLS.

I posted on the RLS forum and they don't seem confident that I have RLS either.

I will talk with the neuro about the pain next week.

Are you on any other meds than the gabapentin?

No, although I may try Lyrica or Keppra instead to help with the pain. Keppra has been shown to help neuropathic pain (if that's what I am experiencing), so if I have to be on meds may as well be on something that's going to help the visuals as well! But for now I am trying some supplements to help with the pain - acetyl l-carnitine (ALCAR) and alpha lipoic acid (ALA).

Do you find Gabapentin is affecting your visuals at all? Particularly if you have 'movement of stationary objects' a little worse?

My visual snow seems worse. I'm not sure when that happened (before or after gabapentin) and I'm not sure if it's related. I don't have any movement of stationary objects.

I have now tried up to 1800mg a day but did not get any real relief. So decided to stop. Although I was in a fair bit of pain last night so popped 900mg in one go and it seemed to help.

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I am getting more and more certaim that i have rls, the muscles on the back of my right leg have been jumping and vibrating like hell lately. Right now my leg is living it's own life...

I might buy some iron and vitamin-b supplements, if that don't do the trick i will go to a doctor and maybe get ropinirol prescribed, would be interesting to see how that would affect hppd.

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That doesn't sound like RLS to me, RLS is an overwhelming desire to move your legs to get relief. It is a conscious decision. Sounds like you have some weird kind of spasm!

My situation is proving a real pain in the arse (literally). Had an MRI of the spine and lower back recently - just waiting for the results.

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Oh i see! The spasm has died down now :P It suddenly moved up in my right ass-cheek and my ass was wobbling like crazy, friends and my gf thought it was hilarious since you saw it through my jeans...

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Thanks for the suggestion, but the symptoms do not match up too well with what I experience.

I am in a fair bit of pain right now. Will try and get some money together to pay for some tests that the NHS have as of yet not provided. But most likely will come back negative for anything wrong, just like every other test!

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For me, the weird leg sensation feels like you need to stretch but it's like you can't stretch enough (lol). Again for me, the weird leg sensation seems to go hand-in-hand with the HPPD; and I think it goes away when most of the HPPD/flashbacks go away. Sometimes, it feels like i wanna punch the sht out of my calves. Some people have said of Requip as a treatment for HPPD w/ RLS but I know there are most likely no studies yet. Man hp sux. :blink:

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Actual RLS is a dopamine problem (as mentioned in post #9). Requip and Mirapex (mostly D3 agonists) were developed specifically for it. Some doctors will prescribe Sinemet as well but typically it only works a couple years.

Using 'brain injury' as a role model ... since brain injury from chemicals often involves peripheral nerve injury as well ... and that many with HPPD have peripheral issues too, I would suggest trying a simple dietary intake that helps to encourage nerve repair/growth with nutrition (the CNS loves this stuff),

~5000 mcg of sublingual methylcobalamin (B12) – 3 days on, 2 weeks off [ Note: injectable (typically 1000 mcg) contains aluminum, so it isn't first choice ]

~1000 mg GPC – 3 days on, 2 weeks off

~3000 mg MSM – 3 days on, do what you want the rest of the time

Take as one dose in the morning. This 'pulse' dosing works better than continuous use of them - especially B12. For GPC, the best I've used is a liquid form (1200mg) made by Crayhon Research.

Also ~1500 mg Lion's Mane mushroom, 2-3 times per day (use hot water extracted)

Then there are more common things: Vitamin C, NAC, Vitamin E (mixed tocopherols), and a little selenium.

If you decide to try any of these, look for quality – which means it isn’t Walmart cheap. I hate to post brands but so far I've found Vital Nutrients, Designs For Health, and MushroomScience to be top sources. Give it a try for 2-3 months and see what you find. These have been core for improving some of my problems. Maybe its made low dose Sinemet so helpful?

Hope this helps...

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MRI spine, lower back, pelvis - without significant abnormaility. Couple of disc bulges but nothing relevant. The search for answers goes on...

Not really sure where to go from here though.

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Nerve conduction study reveals that my nerves are in perfect working order (no trapped nerves, nerve damage, etc). I've been recommended to go and see a rheumatologist.

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Guest 1998

So crazy, Ive been suffering from all these problems throughout my body for 5 yrs. I thought it as due to sports and work injuries, but my mri"s keep showing up fine for the most post. Also any body out there starting klonopin Its not worth it. It will catch up to u in the long run and possibly destroy anything you ever had going for you until u complete a 6 month to 2 yr. Unbearable rehab. Sorry hate ppl bashing benzos but its just the truth

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So crazy, Ive been suffering from all these problems throughout my body for 5 yrs. I thought it as due to sports and work injuries, but my mri"s keep showing up fine for the most post. Also any body out there starting klonopin Its not worth it. It will catch up to u in the long run and possibly destroy anything you ever had going for you until u complete a 6 month to 2 yr. Unbearable rehab. Sorry hate ppl bashing benzos but its just the truth

I've been put on klonopin and I only take a 0.5mg dose whenever I am feeling a panic attack coming on and that is usually once in about two weeks so I doubt it will hurt me at such low usage. 0.5mg is the lowest dose possible to be prescribed I think and it barely does anything to me. I know that xanax is much better then klonopin for treating panic attacks on spot but I doubt I'd ever get it prescribed with my drug abuse history.

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Potential diagnosis after seeing a private rheumatologist - ischiogluteal bursitis. Possibility of injections to cure it. As it happens, I am already seeing an injection specialist next week through the NHS (free healthcare) next week, so this diagnosis will help a lot. In the meantime, I will be trying a new medication (number four) - flupirtine. 

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