Amitriptyline, Lyrica(?)

I have been going through a handful of drugs. I also am seeing a doctor who is a vascular surgeon (recommended on this site).

So Gabapentin is a drug that I think helps (am taking 2800 mg per day). But I cannot say “boy I wish I was home to take some Gabapentin.”

The next drug I tried was Venlafaxine. It definitely calmed my flares but made me lose my memory. And that was after decreasing my dosage (a common theme with the drugs I have tried - doses that help with my feet usually result in memory impairment). I tried to taper to a helpful dose - again it was one or the other - get meaningful flare relief with memory problems or vice versa.

So the next drug was mexilitine. I’m glad it did nothing for me so at least I could move on. I’m guessing the lack of a response is telling me something - my problems are not vascular.

My next tryout was (and is) amitriptyline. It helps the flares a lot. I was hoping it was my last stop. But after a while, it was like the others - memory impairment.

So I’m thinking of trying a different drug type. I took one Lyrica about 4 years ago. I had respiratory issues after and believe it or not my feet were quite cold. Rightly or wrongly I stopped taking those pills after one. But I’ll come back to this later.

A few weeks ago my chronic back pain came to a head. So I had the following: Left L5 Lumbar Transforaminal Epidural Steroid Injection for pain. The first night my feet were COLD to the extent of being painful. But other reactions were very interesting. My feet and lower legs were virtually pain-free. The swelling went out of my feet. The bottom of my feet became flat and not swollen - it was nice to walk around the house and not to be on swollen feet. My fingers and toes became limber and not swollen. All these positive attributes lasted a couple weeks.

So I hope to try lyrica. Amitriptyline on a lessor dose is likely Plan B

I tried all of the above you mentioned and none worked for me. Plus they are made my head feel foggy. I went to Cleveland Clinic vascular doctor. He recommended cyproheptadine which was the only thing that started to help. After about a month of trying different doses I could finally see relief. I’ve been taking now for 7 years. After some research I started taking 325 aspirin daily and magnesium. This combo works for me. It is not a cure but relief I can live with. I rarely have flares unless I have to go off aspirin for a few days and they worsen. They still get red and swell when on my feet a lot but will cool off naturally after resting. I hope this is helpful.

Part II: I started taking lyrica (started 25 mg but then upped to 50 mg twice daily. I am still also on amitriptyline (85 mg). It seems these two have the same drawbacks as other drugs that inhibit the EM symptoms. The lyrica DOES help the EM lower leg symptoms. However I have headache symptoms and poor sleeping. My doctor kept me on amitriptyline in case I had to bail on the lyrica. I might suspend the amitriptyline to see what the lyrica might do. The combination of both drugs keeps me mostly flare-free; it is a good thing since I cannot sleep.

As is always the case - drugs work but their side effects render then not so useful.

My doctor is now looking at Quetenza. It is capsaicin in a pad. I would love to try but the literature states it is only for diabetes and post shingles nerve pain. I spoke to a doctor who treats with it and she would not administer based on Erythromelalgia.

Has anyone used this?