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@DizzyGirlsSCIG is subcutaneous immunoglobulin. Same as IVIG but subcutaneous infusion. Less chance of the headaches, cannot remember the medical term today, bad brain fog. When I get the low grade fevers (or not quite!) I get the terrible flu-like malaise, achy, joint pain, just feel horrible. This also happens if I overdo it, so I know to allow plenty of rest.

I get these low grade fevers from my AI disease flares. It’s one way I know the AI is flaring. Are either of them being treated for one? My fevers lessened when I started Plaquenil and are even fewer now on SCIG. I also get malaise and generally feel awful. I don’t get them from allergy flares.

I had an EMG to rule out possible causes. I *think* the EMG is used to rule out Parkinson’s because dys often comes along with that.

I do a modified Levine protocol supervised by my PT. She had me increase time first, then resistance. I love my rowing machine. I listen to my body and now that I am able to do longer periods I take two days off between aerobics, sometimes one day. On those days I do strength training. If I don’t take the time off to recover I get the severe exercise intolerance. It took a lot of trial and error to figure out this regime. My PT says my goal is 50 minutes every other day but that’s a long way off yet. Some days I only do ten minutes because I just can’t do more, it depends on what else is flaring and other activities are going on. I found that increasing the resistance too fast aggravated my coat hanger pain so keep that in mind. Keep it up!

This happens to me all the time. When my BP goes up HR goes down. I took a 7 minute walk outside with the PT last week and we checked my vitals when we got back in my BP was 166/93 HR 59. The HR was fine. When I was having more supine hypertension before I started carvedilol my BP would be 150-160/80s with HR in the 40s. My cardiologist switched my alpha and beta blockers, not at the same time, and things are better controlled now. I was told sitting BP should be 150 systolic or less and not to worry about it unless it gets over 180 . This is not while exercising. My PT wasn’t worried about my BP last week. Talk to your cardiologist about it but don’t freak yourself out unless you hit crisis territory.

Idella, the biting insects are here and I am still reacting badly to bites. SCIG hasn’t helped this.

Just FYI-I was on top ax for severe migraines years before my dys hit. I tried it again post dys diagnosis and it gave me headaches so I had to stop.

Thanks @Outaker How is it going? I was surprised that you are on both Tenex and Cardiodopa. I think I am missing something? Is the peripheral action against dopamine or some other catecholamine than norepinephrine (which the Tenex should hit?)? Please let us know how it helps or not. Thanks.

I take flexeril too but it seems to have stopped helping recently so I just got a prescription for orphenadrine today so haven’t tried it yet.

@Pistoldo you get them overseas before the flight back? I very desperately want to go visit or go to my mother-in-laws funeral (she’s 96 and in better health than me) whenever that is. She’s in the West Midlands in England and I fear that I won’t get a Dr over there to honor a US script. Do you suffer from overstimulation? Do you think that the fluids would help with that?

I am impressed that you both can manage to fly. Congratulations! My neurologist told me if I ever thought I could travel any distance by car or air she would give me IV fluids a day before and a prescription to get them before I would leave wherever. I don’t know if that would help with the overstimulation or not.

I get these quite badly too. What I do that’s only marginally helpful but every little bit helps, is get massages at physical therapy because my muscles are very tight, use an arnica rub on the trapezius muscles, use a hand held massager (PT recommended this to work out the knots) and this https://www.amazon.com/gp/product/B071JFYTLD/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1. I have an IceKap Https://www.icekap.ca/ that helps too. I also have a prescription for Fioricet for when they get bad but my neuro won’t let me take more than two capsules three times a week so I really have to be suffering to take any. I wish there was more research into this symptom because it’s awful to have headaches every day. Another thing I have found is that I am worse with a pillow that doesn’t align my spine properly.

Sending good vibes your way. Please let us know how you get on. I wish I had more to offer but agree on the ER being appropriate.

I agree with @PistolWhen I first got sick we tried mestinon and I had very similar side effects. I won’t go into detail but I ended up hospitalized and even more ill than before. These side effects are *nothing* to mess around with. I was switched to midodrine, which I couldn’t tolerate either before we settled on fludricortisone. That worked for a few years until my BP became too high and we stopped it. There are other drugs and it’s trial and error so don’t give up but do stop this drug. I don’t want anyone to go through what I did. My neurologist was seriously concerned about me to the point of calling twice a week to see how I was doing. If you want the gory details send me a message and I will tell you.

I wasn’t on Facebook either but joined for 3 days when my beloved PCP left his practice. I asked the state group for recommendations, got one and deleted my account. I had visited a few before but was very disappointed. One was obviously scared to treat someone who takes so many meds. The recommendation from someone with dys has been very good. She’s with the local medical college where they have a dys neurologist and is familiar with it. I don’t do social media but in this case it was worth it for a few days because, like you, I was not having any luck with recommendations from family or friends.

Interesting abstract. Please let us know how it works for you. I take it you have hyper pots and/or labile BP? I will be very interested in seeing how you do on it.

Oh @RecipeForDisasterI am so sorry. I had a similar experience with the first rheumatologist I saw but the second one listened and did a thorough exam. I have found that joining Facebook dysautonomia state groups can sometimes help find a Dr familiar with dys and who listens. It might be worth asking there for a recommendation for a rheumatologist.

@Pistolawesome explanation of peripheral resistance, thanks. I haven’t taken anything other than short lukewarm showers since I was diagnosed. I too use a 2 in 1 shampoo and conditioner. I only shower every 3rd day after aerobic exercise and for several years had to lay down afterwards for awhile. When I was really bad I showered every 5 to 7 days at night with my husband’s help and went to bed immediately afterwards. My husband now just stays in the house when I shower in case I fall or need help.

Thanks @firewatcherI am on BBS so won’t be trying these but man, I would love something to help the headaches. Topomax gave me headaches as did Effexor.

Wouldn’t being the hospital and monitored be a good place to start a new med? It just might help. @firewatcherit helps with daily headaches? Migraines?

Hi ladies. I found that Plaquenil hasn’t lowered my wbc except for cases where I am flaring or have had a cold. It’s more a DMRA drug than heavy biologic. @PistolI was pleasantly surprised that my rheumatologist knew about Dysautonomia. He explained that a few patients have it because AI and dys strike the same population. He wasn’t keen on IG therapy but my neurologist shared the recent research and is very persuasive. On the SCIG my recent wbc was the highest it’s been since I got sick. Like others have said he’s open to letting me experiment with steroid dosage. I have hydrocortisone which does cause tachycardia but haven’t needed it since I started the IG.

I was sero negative for any autoimmune disease for thirty years before my ANA came up positive although I suspected AI for all of those years. Nobody would treat me until I had a positive one. I had a number of low level results but nothing positive enough for a definitive diagnosis so am labeled UCTD or MCTD depending on what my rheumatologist feels like calling it. I started on Plaquenil and that helped with fatigue, malaise, joint pain after about 6 months. Not tremendously but certainly noticeable. It has done nothing for BP/hr. My advice for the first visit is bring up every ache, pain, low grade fevers, mouth sores, malaise, dry eyes, joint pain, foot pain that you have. I never realized that the foot pain that had me buying new, expensive shoes was because my joints were swollen. I wasn’t terribly aware that my finger joints were swollen either but I knew I couldn’t get certain rings on my fingers anymore which was also a clue to him. In my experience rheumatologists are generally conservative and don’t want to treat without positive labs. I also have a positive on the Celltrend panel and my neurologist convinced my rheumatologist to allow SCIG. My choice of SC over IV because I already have migraines and am afraid of the aseptic meningitis. That’s helping a lot now too with AI symptoms but like Plaquenil, it’s taken several months. Still little effect on BP/HR but I am blood pooling less and BP/HR are reasonably stable. They will likely take blood unless your blood test results are recent. I had a number of tubes taken to rule out anything else and to test for further AI disease. It wasn’t the 24 I had taken by my neurologist to rule out everything for my diagnosis of dys but maybe 10-12. In my experience it seems that they make money off the blood work so everybody orders new tests. Please let us know how it goes.

I credit my physical therapist for a lot of my improvements. I started at physical therapy with a water treadmill, it helped a LOT. I have a stationary bike, rowing machine and now a treadmill at home and use one or the other 3-5 times/week. I do more minutes 3-4 times/week and shorter duration (10 minutes) as many other days as I can. I also do strength training suggested by my PT 3 times/week.

I agree with @Pistol I try not to overdo anything on the good days even though it’s really hard. When it gets hot and humid here (Great Lakes) I have to increase salt and fluids and not go outside if it’s >83 or so. The humidity is harder on me than the heat. I definitely take it easy on those days and only go out early or late if at all. While those are the worst days to wear compression stockings they do help. I hope you recover quickly.

I have hyper POTS too. I was diagnosed with high catecholamines on one of my first appointments with my neurologist. When my BP was lower than it is now I did increase salt. In my case my BP drops when I stand then starts to climb for several minutes then slowly drops again for several minutes then climbs again. It’s always done the immediate drop and when I was first diagnosed 4 years ago it started out lower and stayed lower so the drops were more significant 80-90/60s. I used a lot of salt capsules then. Now my BP is low in the morning and then steadily rises as the day goes on but I still get that immediate drop on standing. I take 1 vitassium capsule with about 8 ounces of water before I get out of bed and wait 5-10 minutes then get up. I don’t take any extra salt throughout the day unless it’s hot and humid and I am blood pooling badly. Then I also add extra fluid. I have an extreme gastropressor response to fluids and can actually control my BP with fluid intake. For hypertension/sympathetic overload I take coreg (BB) and guanfacine ER(alpha blocker) thanks to @Pistol. It’s a combination that works well for me.