Please permit me a minor vent

[SjoGirl]

Hello all,

Mostly be lurking in the background and responding to posts. I have been in increasing amounts of pain, having ocular migraines (and unless I take Tylenol every night real headaches on the verge of migraines), heart palpitations wake up nauseous almost every day and my hips are incredibly locked up and ache all the time. This week a petechia also appeared on my arm, no bleeding thankfully (they sometimes do) and no more so far. FYI shared my most recent bloodwork with my PCP, she said, yep, you will get petechia given those readings.

I wrote to my PCP about meds and have an appointment to discuss meds and have one for about 2.5 weeks from now. I need some assistance now as I know I'm headed down a rat hole, been here more than once. Just tired of there not being a systemic treatment for this disease, hate adding med after med (I'm not taking a lot, but could add at least two more) and also just tired of hurting all the time.

I am in much better condition that many here, so apologize for venting. That said,  it is going to be  a stressful weekend which will require me doing a lot of listening to others who are suffering. Just needed to get this out. Thank you for listening.

[warmwaters]

Never apologize for needing to vent. We're all carrying different burdens. Just because someone over there seems to be carrying a heavy burden doesn't make yours lighter - you're experiencing pain and frustration that is real and hard to deal with

I wish I could offer some advice, but this is a range of symptoms I don't know much about.  I'll just say if you can find a few minutes for yourself in this stressful weekend that's coming up, go ahead and take them. Take a walk, or lie down, or put a cool washcloth over your eyes, or whatever you'll find helpful.

And if it's dealing with family, remember to keep your sense of humor. I know I often need mine when I'm with my relatives.

[Carolina]

Oh dear, minor vent, major vent, rant, demi-semi rant/vent.....

We're all entitled.

I am in a weird place....no vent or rant.  Instead I had a procedure on my back which didn't accomplish what it set out to do, BUT the cortisone injection (last resort) is giving me relief from the pain.  i kept thinking, 'well this won't last', and then I realized I could enjoy it while it lasts right!??

when the pain returns, I will follow up on surgery to stop the pain on a longterm basis, but I am enjoying my current freedom.

Oh, adding med after med is what we do, right,SjoGirl?  I'm on the tail end of stopping my gabapentin, right now.  But I've upped my Medrol, which achieves the same level of relief from my Small Fiber Neuropathy.

You know, we do what we must. 

I've only had about three migraines in MY LIFE (age 74) and I can remember every one, where I was and was it was like.

Migraines so suck.  you are entitled to hate them and avoid them at all costs.  Does that drug help....starts with a P?

My husband relies on it.

Hugs,  Elaine

[jazzlover]

Do any of the migraine prevention meds help you? (Imitrex is one)

Taking Tylenol really messed up my liver and now I can't take it at all. I do hope you can find a natural or a prescription preventative that will help.

[bluegardenia]

Carolina,for peripheral nerve pain they gave me something called NORMAST, i dont know if  it has the same name as in europe. its main principe is PALMITOILeTHAMIDE (PEA) and for me it works fine. its not a strong drug, a part that palmit etc it has magnesium inside

[Tharrell]

I'm so sorry things are going bad again! My neurologist told me to take 2 250mg of B2 every day for the migraines. At one point she had to tell me to lay of the excedrine, because The headaches were getting worse everyday. Told me I was having rebound headaches. Wise woman. Had to bite the bullet for a couple of days and then magically the headaches were gone! She also had tested me for B6 which not many doctors due and found me severely defficient. That also contributed to the headaches.
Hope it helps!

[SjoGirl]

Thanks all. We made it through the family weekend relatively unscathed. My sister was recently diagnosed with stage 3 colon cancer and will start chemo soon. She was moving, is scared, and I got to spend time with her and take care of her (it has always been the other way around as she is the oldest of us).

Tharrell I have tried laying off of Tylenol for a few days, but the pain in my neck and lower back then keep me up at night.

I have not yet tried a migraine prevention drug, Gabapentin is the one they prescribed since I was also experiencing Myclonus.

I have only 16 more days until I see my PCP and another six after that to see my rheumy, hopefully I'll have a plan by the end of the month. I've survived this long, unless something really goes awry I can make it to the end of the month.

Thanks again,  you all are wonderful!

[Nomad]

I'm so sorry, Sjogirl (hugs)
Migraines are the pits. I use to take Imitrex fairly often. But, now I take Treximet. Treximet is a weird combo medication. It has a peculiar dosage of Sumatriptan (sp?), which is what Imitrex is made of. It's the exact amount known to be of help for migraines. It is based on a study that zero's in on a very helpful dosage. 
And it also has a little of an analgesic...I think Ibuprofen. It works very well for I've also found diet changes helpful. Odd things like Bananas can give me a bad migraine.
I am a big believer in the theory that sometimes multiple things contribute to the eventual migraine.
Years ago, I use to write articles on migraines for a health website. It was a fun/crazy job.
Some things well known to contribute to migraines include...although everyone is different:  wine, liqueur (in general), soda, chocolate, aged cheeses, jello, bananas, yogurt and withdrawal from coffee (caffeine)
I think magnesium is helpful and take a tablet every night before bed. Also co-q 10 and the B vitamins.
I take a low dosage of Topamax daily as a preventative.
Wishing you well.


Elaine!....so good to see you...was thinking of you just today and was about to inquire. (((hugs)))

[SunshineDaydream]

I hope you are feeling better today and aren't worse for the wear after weekend with your family.

I recently researched bioavailability of different types of magnesium and found that the glycinate form is supposed to be good for migraine prevention and treatment. Just throwing that out there in case you want to give it a try. I have read it's best taken on an empty stomach as it needs the stomach acid for absorption, and shouldn't be taken with calcium as they compete with each other.

[SjoGirl]

Thanks Sunshine. I take Nexium daily so likely don't have sufficient stomach acid to make the magnesium worthwhile. Also, I eat a lot of nuts so should get my daily dose from them.

[gurs]

I was getting aura migraines almost daily..then, I cut out alot of my dairy, and they are sooooo much better...

Not sure how tylenol evens helps since Its not an anti-inflammatory? if you can, try some motrin. I take 1-2 caplets everyday broken down throughout the day, and then 1/2 extra strength tylenol. I have hormone issues too, so its been a challenge trying to keep them at bay.I also noticed that when my allergies are bad, thats when i most often get them.

I feel for you....they are horrible. Some of them cause my entire left side to go limb..its scary!

A natural herb called feverfew works good too...check with your health food store

Gursie

[SjoGirl]

Thanks gurs, I don't use dairy except on rare occasions (e.g., today we were out in the country and we stopped for lunch, tough to find something without gluten and dairy).

I cannot take anything other than acetaminophen as I have thrombocytopeina and other penias. If I take Motrin I might bleed internally.

Fortunately the headaches aren't usually painful, I more typically am nauseous. The back of my head sometimes hurts. 

My neurologist believes this is all from my neck, Tylenol helps with pain and seems to relax me. I may try a muscle relaxer tonight as I also have stenosis in my upper and lower spines, I believe those probably play a role.

Thanks again.