Possible treatments for static mechanical allodynia?

[MagickalKat777]

I figured that since this is a rare condition, this would be the best place to put this topic but feel free to move it if it is appropriate somewhere else.

I have been diagnosed with static mechanical alloydynia - it is a nerve response that is characterized by pressure or touch that would normally not be painful becoming very painful (for example, if I put a shirt on, it starts to feel like I'm burning and I can't sleep on my back because the blanket causes the same sensation on my chest) but strangely not affecting the pain from higher levels of pressure or touch. I can put a phonebook on top of my chest and I won't feel the pain anymore, I just feel the normal expression of a slight pressure on my chest.

There aren't many medications that are known to work for this condition. I've tried gabapentin and I don't respond well to it (it DOES work but I'm extremely sensitive to it and I start getting rapidly intoxicated at 300mg twice a day which means I can't take it at all). Ketamine is another treatment for it but obviously I can't be on ketamine all the time. Opioids are another treatment.

Can any of you think of other more suitable possible treatments? Wiki mentions sodium channel blockers and glycine antagonists but I'm not really familiar with them. From what I am seeing of glycine antagonists, I don't really think I would be using them - strychnine, picrotoxin? Ummm...

Obviously this severely affects my quality of life. I can't handle a shirt being on me for more than a few minutes before the burning sensation starts but the doctors are pretty much at a loss as to what to do about it so I was wondering if any of you geniuses over here had any suggestions I could toss around with my doctor.

 

[arctica]

I have heard of botox injections being used successfully for allodynia (extreme pain evoked by a light touch) in a quadriplegic resulting from a spinal cord injury. It might be difficult depending on the extent of the allodynia, but even treating just the most painful areas might increase your quality of life, botox wouldn't be intoxicating or potentially addicting, and would wear off in a couple months at which point you could decide if a repeat was worth it. Seeing that you're based in Denver, have you tried medical marijuana? It seems to pull through for a lot of people with pain issues not addressed by the standard pain doc's arsenal.

ETA: do you know the cause of the allodynia (e.g., nerve damage, unknown, etc.?)

 

[MagickalKat777]

Botox injections? Yikes!

I have severe panic attacks from marijuana, even Indica dominant strains. It is a shame because I have heard that marijuana is useful for SMA.

As for the cause - they have no idea. My theory is that it is a mild neuropathy potentially brought on by benzos and alcohol over the years but the doctors have no clue. What I do know is that it has made me suicidal on more than one occasion and that when I'm drinking, it hardly bothers me at all. I obviously can't be drunk 24/7 either though.

I would experiment with higher doses of dextromethorphan for it but I don't really think that is such a good idea considering that I have panic disorder on top of everything.

 

[arctica]

Botox injections? Yikes!

I have severe panic attacks from marijuana, even Indica dominant strains. It is a shame because I have heard that marijuana is useful for SMA.

As for the cause - they have no idea. My theory is that it is a mild neuropathy potentially brought on by benzos and alcohol over the years but the doctors have no clue. What I do know is that it has made me suicidal on more than one occasion and that when I'm drinking, it hardly bothers me at all. I obviously can't be drunk 24/7 either though.

I would experiment with higher doses of dextromethorphan for it but I don't really think that is such a good idea considering that I have panic disorder on top of everything.

I have panic attacks too, both in general and sometimes from marijuana, although I wouldn't write MMJ off completely, as legalization has brought about a wide variety of routes of administration (edibles, tinctures, even transdermal patches(!)) in versions that feature specific sub-compounds (like CBD, which apparently reduces anxiety). Smoking weed can be pretty intense, regardless of strain (as can edibles, especially if you ignore the warning to not eat the whole yummy thing in one go, ask me how I know), but my MMJ doc had me start at like 1/16th of a brownie.

My gut feeling would be to avoid higher doses of DXM, especially if you are prone to anxiety. Instead of going that route, consider getting a script for ketamine instead. Does your doc have any ideas besides gabapentin and opioids?

 

[MagickalKat777]

I have panic attacks too, both in general and sometimes from marijuana, although I wouldn't write MMJ off completely, as legalization has brought about a wide variety of routes of administration (edibles, tinctures, even transdermal patches(!)) in versions that feature specific sub-compounds (like CBD, which apparently reduces anxiety). Smoking weed can be pretty intense, regardless of strain (as can edibles, especially if you ignore the warning to not eat the whole yummy thing in one go, ask me how I know), but my MMJ doc had me start at like 1/16th of a brownie.

Panic attacks are a bitch. I had my first one from smoking weed while rolling face. Happy 20th birthday, right?

Once they start selling it retail in January, I might start experimenting with it. Its too hard to get a medical marijuana license right now and I'm tapering off of my benzos anyway so I don't want to risk it. I do know that I used to smoke a hit of DJ Short Blueberry and it would sedate the hell out of me but I had to take a hit, wait a few, take a hit, wait a few, because I'm extremely sensitive to cannabis now (I had no problems with it previously, no idea what happened, I took 9 months off for probation and it was never the same when that ended).

I have always been scared of edibles after my stupid teenage experiment of an eighth baked in the oven on a Totino's party pizza with extra cheddar cheese on top of it to get the oil in. I was completely paralyzed when that hit and remained that way for a good 4 hours. lol.

My gut feeling would be to avoid higher doses of DXM, especially if you are prone to anxiety. Instead of going that route, consider getting a script for ketamine instead. Does your doc have any ideas besides gabapentin and opioids?

Well I'm already using DXM daily - 5mL of Delsym twice a day - to assist with the benzo taper. It seems to keep me from getting depressed, I haven't gone into panic mode once because it has helped keep my adrenaline levels low, and I'm sleeping without needing any other meds which is something I never thought I would experience. I just figured since I bought the stuff in bulk, I could test low doses of like 20mL twice a day - its a total of 240mg of DXM Polistirex in a 24 hour period (I keep very good track of my dosage and try to keep it as close to 12 hours as I can and I take my Valium dose at the same time) which isn't all that much. I guess I should have clarified "higher doses" by saying that I'm already taking 60mg a day.

I know my doctor would never let me have ketamine as a prescription. Do they even prescribe it in the US? I haven't looked that far into it.

As for idea - my doctor is at a loss. Apparently static mechanical allodynia is as rare as it is poorly understood. My doctor suggested Lyrica but I simply can't afford it and the last time I had Lyrica, even 300mg a day didn't do anything to me so I seem to be immune to it.

I don't know what to do. It is really hard trying to explain to people why I never put a shirt on though. Or why when I'm forced to wear one, the collar ends up wrecked in a day from me habitually pulling on it because I'm in pain and feel like I am suffocating to boot.

 

[tyrael]

.....As for idea - my doctor is at a loss. Apparently static mechanical allodynia is as rare as it is poorly understood.....

Hmm sounds terrible! I'm sorry to hear this, any form of neuropathic pain is terrible (and difficult to treat)!

(although not much help....) It does to me sounds like it's time to be referred to be an analgesic/pain specialist. ??

Good luck mate!!

 

[arctica]

I know my doctor would never let me have ketamine as a prescription. Do they even prescribe it in the US? I haven't looked that far into it.

As for idea - my doctor is at a loss. Apparently static mechanical allodynia is as rare as it is poorly understood. My doctor suggested Lyrica but I simply can't afford it and the last time I had Lyrica, even 300mg a day didn't do anything to me so I seem to be immune to it.

I don't know what to do. It is really hard trying to explain to people why I never put a shirt on though. Or why when I'm forced to wear one, the collar ends up wrecked in a day from me habitually pulling on it because I'm in pain and feel like I am suffocating to boot.

Ketamine is a controlled drug, but it is legal to have a ketamine script in the U.S. I would doubt that a general practitioner would be comfortable prescribing it, as it's currently in clinical trials as a pain drug, but seems to be gaining acceptance as an alternative to opioids for pain, especially in palliative care populations. However, it's definitely experimental and no guidelines for pain dosages exist (as opposed to anesthetic dosages). The biggest problem with ketamine is that they don't sell a pill formulation or anything like that...just vials of liquid that would need to be compounded by a pharmacy. Could you ask your doctor for a referral to a specialist, either a neurologist or a pain doc, or both? You may be the first case of SMA your doctor has ever seen, and he could be well out of his area of expertise.

 

[Sturnam]

This review looks at low-dose naltrexone. It's listed for a different condition, but shares the same feature of allodynia.

You should look into it. Or maybe Neurokinin-1 antagonists, or CCK-antagonists.