jklass44

Anyone get random breakouts of purpura or petechiae? I never know what to make of them because my CBCs ie platelets are always normal! I get the rashes mainly on the underside of my chin and the sides of my neck, inside my mouth and inner cheeks and the more typical spot like feet/ankles. The rashes don’t bother me, but they happen every few months in clusters and as I mentioned my bloodwork is always normal. Any suggestions? A specific test I should ask for? Maybe just leave it alone?

I agree with @Pistol when it comes to finding a doctor that will work WITH you and TOGETHER with any other physicians that may be in the picture. I also fired 3 cardiologists during my journey - one of whom told me straight to my face that I was “making this up to seek attention”. You’re not being a difficult patient. Trust me. Your health is very important and worth fighting for!! Keep at it and best wishes!!

Couldn’t agree with this more! I see so many doctors just to treat certain symptoms, and it would definitely make my life easier if there was just one doctor to treat the whole system, but alas... I am currently also stuck in an awful wave of nausea symptoms. Not eating as much, wakes me up at night, etc. Just stick the ginger straight into my veins!!!

@Anne77 Have you or your neurologist looked into IST? A symptom can be a high heart rate while sleeping. Many of the symptoms overlap with POTS minus the postural changes. Best wishes!!

@bombsh3ll I’ll be honest, right now I’m lacking all energy to reply to this properly, but I just wanted to say YES FINALLY!! I know you’ve been searching for so long and I’m glad you finally have some answers - and that it’s treatable!! I sincerely hope the funding comes through for you. Please keep us updated!! xx

I can’t help but comment because you bring up an interesting point... I also have endometriosis (which was first discovered in 1860 according to my google research) and there has yet to be a cure let alone a decent treatment to control it!! Obviously there are a ton of things out there worth researching, but I think the ones that hit us close to home and are more personal clearly bring on more frustration and doubt. To sum up, as positive as I try to stay, I totally understand where you’re coming from!

I live on the west coast of Canada and we pay into a Medical Service Plan for our insurance, which is based on your annual income. So its not “free” per say but it’s definitely so so much cheaper than the states. The majority of meds I take for POTS are also not even covered under my plan so I pay straight out of pocket. Still, the things that are covered I am eternally grateful for because it’s better than nothing - I’m very sorry to hear about you and your wife’s struggles! It can’t be easy. Ps, not all of Canada is cold so she might actually enjoy it if you found the right place lol!

Very interesting article - thanks for posting!! @Sushi Keep us updated on the Mestinon. One of my doctors suggested I try this medication at one point, but I have such bad GI symptoms already that I declined at the time.

I’m just curious but why do you take clonidine if you have such severe episodes of hypotension?

Everyone has a different “normal” but that does seem a little low. If you’re having additional symptoms with the hypotension I would definitely let your doctor know! Maybe he/she will need to make an adjustment in your medications (if you take any). Have you been less active this week? Any change in your environment? This week has been very warm where I live and my BP has been much lower than usual. Regardless, keep hydrated, and best of luck to you!

@Nicoline Have you had your ferritin and B12 checked? What about a holter monitor? You’re female, are any of your symptoms worse/better during certain times of your cycle?

@Yhoun Have you had your Vitamin B12 checked recently? A deficiency can cause nerve pain, which may be the buzzing feeling you’re describing. I used to get numbness, pins/needles and “ice cold” feelings inside parts of my body... I didn’t respond to supplements so I get biweekly injections. Best wishes to you!

Pulse oximeters, when they work, are very accurate, but that being said they are super finicky. Like others mentioned, they can be affected by any sort of movement, but also cold body temperature, hypotension, anemia, etc can cause inaccuracy as well. I usually warm my hand up first and then take a reading staying as still as possible or resting my hand on something so it doesn’t move/shake. Are you getting symptoms when these readings are taking place?

I agree with what @bombsh3ll said about not taking it while you’re alone for the first little bit. When I first started Clonidine it knocked me off my feet within the first half hour. To this day it still puts me right to sleep (I only take 0.1mg twice a day) however I never actually STAY asleep, which is annoying and exhausting. It also gives me bouts of nightmares and night sweats. My doc is thinking of switching me to a different med to control BP because it’s starting to creep up, and I really don’t feel comfortable trying to increase Clonidine again. This drug isn’t for everyone. If you do try it at least give it a week or two before you decide if it does benefit you or not! Good luck!

That’s interesting that you mention this! My docs had recently increased my dose of Ivabradine because I was still getting tachycardia when I shouldn’t, but the small increase was enough to drop my HR to the 30/40s and I felt just as awful when my HR was high, maybe even a bit worse. So now I’m back to the previous dose and just dealing with the break through tachycardia - theres no winning!!!

Yes I am in the same boat. I honestly don’t go outside much, especially in the spring or summer months, due to the heat and the fact that I feel blinded even with sunglasses on. It’s crazy how many people on this forum seem to have some sort of hypersensitivity to bright lights and/or sound... It sounds like the only thing that helps is avoidance of said triggers.

I find that my symptoms can be very much like a rollercoaster and inconsistent at times. Some days, I’ll get symptoms immediately upon standing (HR/BP increase, dizziness, nausea) but then they slowly start to subside - not go away but become more manageable - and then there are other days when I’ll be standing for 20+ minutes before I see a dramatic increase in HR, BP, etc which then forces me to lay down. Did you end up making another appointment with your GP? Perhaps you can ask him for a referral to someone who might be more helpful?

Great to hear @MeganMN ! I’m glad the ball is finally rolling for you and that you’re feeling a little bit less fatigued. Good luck at Mayo!!

The thought of going to a crowded gym and potentially passing out is already exhausting on its own! Ha! I wish you luck with it too - might be a good idea to take someone with you if you decide to do that trial run! xx

Honestly, not much. I was a little disappointed. He was honest with me and said that majority of his patients suffer from headaches but that he hasn’t found a way to treat them successfully. He suggested a few preventative medications - most of which I have tried already - like triptans such as Relpax, Axert, Maxlt and also Cambia. Other than that he said I should go see a neurologist (which I have, so maybe I just need to see a different one...) He was all for the rowing machine though and by the sounds of it in this thread I think I might give it a go!!

@Pistol I had my consult with Dr. Raj earlier today and he talked a lot about deconditioning, exercise intolerance and how important it is for us to try and push ourselves through even the smallest amount of physical activity (I struggle immensely with this). I actually asked him the same question you had - do you increase time or resistance? He said he tells all of his patients to increase time rather than resistance at all, and they’ve apparently seen a lot of positive results! I wish had taken down the name of the study he referenced in regards to this too - oops!

Hi @Hannah36 - I’m in the exact same boat as you... Coathanger headaches with no relief from painkillers. I have them everyday, I honestly can’t temember the last time I didn’t have a headache. I’m so sorry to hear you’re going through this too - it’s just awful! Doubling up on ibuprofen and putting an ice pack over my face and neck used to help, but not so much anymore. I’m seeing Dr. Raj in a couple of weeks and am hoping he will have some other suggestions for me. I’ll be sure to share them if he does!! I hope your doctor has some good suggestions for you too - best wishes and hang in there!!

Depends where you are in Canada. I live in BC and am traveling to Alberta next month to spend a weekend at the autonomic lab there (I think it opened in 2015, so it's fairly new). My cardiologist - who doesn't technically specialize in POTS but has an interest/knowledge of it - put a rush on the referral so in total it will only be a 3 month wait for me. I'd highly recommend finding a doctor (there is a list of physicians on this site that may help you) that at least knows about dysautonomia because I went through so many that didn't, and having the doctor I have now has been life changing. Take it easy and best wishes!!

The elbow and the wrist are common places for the ulnar and radial nerve to become trapped or pinched. If you’re sleeping in an awkward position or have these joints bent (like over your head or curled under your body, etc) it can surely causes tingling and numbness in your hand or arm. I almost always wake up at some point throughout the night with a numb or painful hand!! I tend to just straighten out my arm and hang it over the bed to restart proper circulation. I’ve heard that wearing elbow/wrist braces during sleep can prevent the nerves from slipping or becoming trapped. Best wishes - feel better!!

Showers are awful for me too. The hot water doesn’t bother me but the standing and scrubbing shampoo in my hair is what makes me lightheaded and gives me tachycardia. I try to take my showers in the evening, when possible, so I’m able to just lay down or go to bed right after. A shower chair could be a good idea!