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Okay, just had my first ER visit for this illness. I thought I was having a heart attack. My bp was unbealivably high and tachy was awful, I found it hard to breathe (but my oxygen was fine) and I had chest pain. That night I thought possibly it was some sort of allergy attack and took Tagament and Clartin - but it did not help and the next day - I went to the hospital. They started me out with one nitro - it helped. Then two and some better - then three. Then a nitro paste patch. It gave me a horrible headache - but - it brought my bp down and calmed down the tachy. I know it dialiates the blood vessels and would help to carry oxygen. But with Ehlers Danlos and lax veins - why would this be necessary? I'm really confused. I also had one IV bag of fluid. I was admitted to the hospital and kept overnight and most of the next day. They have run all the heart test and have them back except for the echo and they said it was all okay. Any ideas - anyone?

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The nitroglycerin would counter ischemic pain from over-constriction secondary to a possible adrenaline surge. One of the POTS specialists I saw uses Nitro daily in a subset of POTS patients, those that are over constricted. Nitro and supplements like L-arginine can be useful for patients with nitric oxide deficit. I tried the nitroglycerin patch because I have bouts of orthostatic hypertension and bad coat hanger pain. However, it almost made me pass out. I am only guessing, but perhaps you had an adrenaline surge and the nitro coupled with the IV fluids helped calm things down. Hope you are feeling better.

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I did well on nitro after I was in the hospital for chest pain and elevated troponin levels. It even gave me more energy as long as I only took one every few hours (more than that and my BP would go too low). Crazy huh, because on the other hand I really go downhill if I don't work to keep up my blood volume. I have Raynaud's issues, high BP on standing sometimes, and much higher BP in response to any stimulant or stressor. I was even put on Imdur (the 12-hour nitro pill) and could do so much more while it was in effect. Unfortunately, our bodies develop a tolerance if we use it 24/7 so it's 12 hours on and 12 hours off.

For me, I have lots of blood pooling but my blood vessels over-constrict at times too. Now I take carvedilol which helps quite a bit with the chest pain and fatigue. Carvedilol is and alpha and beta blocker.

I'm glad you found something that helps, and I hope this leads to a more effective treatment plan for you!!!

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Thank you guys for your fast response. Now, I can go to bed with a little better idea of what may be going on. The comments so far, make perfect sense. It could be a combination of all these things.

I have the coat hanger type pain too and it makes sense that the muscles are constricted and probably the blood vessels and heart muscle could be too. I normally take a Bentyl and a Tramadol when I start feeling this tightness - but did not take them - this eposiode - because it was so bad. I didn't want to take something that could have been counter to what I should have done.

My grandmother took the Coreg - which is the med you spoke of. It makes sense why this would work because it works on the norepiphrine and blocks its activity somewhat. I have tested high for noriepi. and am Hyper POTS - somewhat a combination type with both high bp and low and too high and low pulse at times. One of the hardest type to figure out and treat - because of the extremes.

I went and sat with my grandmother before she died and realized that she and I had allot in common with our health. I really think she had POTS too. It was never diagnosed but she appeared to have the hyper type too. Her med regimine was very complex and not very effective. She was super sensitive to meds too, but when you're in a nursing home - they don't listen to the patient there - they do what they want - regardless of the outcome. (At least that's how it was in her case. Being that old and in such a bad situation and near death - is not a good place to be. It was really sad to watch her be so miserable in her last days.) But, I realized that she had been ill for a long time and her sleep in death was a welcome relief for her to be out of her pain.

She also took ACE inhibiters with the Coreg and an anti anxiety med and anti depressive med. She was always low in potassium and took one of those too. I'm trying to remember what all she was on. Because of her anxiety and depression - allot of what she was treated for revolved around that. It could have been high noreipi. levels and POTS. Oh, if we could only figure things out - from past experiences.

I still can't figure out why the constriction with Ehlers Danlos - laxity in veins, varicose veins and poor circulation. I have real bad pooling and edema at times too. They had wanted to give me a blood thinner - but I was afraid of it and took aspirin instead. I didn't see any need for a blood thinner - especially not knowing if I was going to need surgery or not. Didn't want to bleed out - if surgery was needed.

Oh well, any other thoughts would be greatfully appreciated. Thanks for the HUGS and well wishes!!!!! BACK AT YA!

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I just found an old thread, why does nitroglycerin help me - by thankful. I bumped it up. It has some really good info in it. It helps explain things for me somewhat. I'm still trying to sort this out.

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sorry i haven't been posting much, but wanted to chime in. i also have vasospastic angina as a probable add on to my dysautonomia. i encountered a lot of resistance to get it worked up and treated. we are all different, but i personally find tht anything that worsens pots, is more likely to trigger chest pain. i need a very delicate balance between cosntriction and dilation. stockings, hydration, in addition to midodrine and florinef help keep me there. but i also take a low dose calcium channel blocker to prevent overconstriction--2.5 amlodipine/norvasc. I've successfully avoided a major episode for about 18 mos, though i get little twinges that settle down if i lie down and drink. we are not simple! and then there is the youngish woman factor, where we more easily get written off. Thinking of you!(Btw, nitro didn't help me. it just worsened my tachy and gave me a headache! we are indeed different!)

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Alright, you brain wizards - put them to work.

I may be headed back to the hospital tonight. My bp is really high and pulse rate is higher when I stand or sit. When I lie down it normalizes and goes low when I'm nearly asleep. I've been having several rough days and can't seem to get a handle on it. All I could think to do is take some propranalol and a calcium/magnesium and see if that will bring things down. It has a little. But, since I'm hyper POTS and probably have mast cell issues - it is causing me to flush, very hot in the face - hot flashes and severe dizziness. I think my eyes are hurting so bad because of the high bp. I've got light weight support hose on - but didn't wear them for two days thinking that might be better - but when I went to bed last night my feet looked like elephant feet - so swollen with no ankles. So I just put the knee high socks on. I've also tried allergy pills and that doesn't seem to make a difference. I have ringing in the ears too. The propranalol seems to be helping the anxiousness that the wild swings and norepi are causing - but I still feel U C K E Y!!!! Any ideas - what else I could try. I've drank enough today - but still feel dehydrated. I've had too much salt I think - drank a G2 and ate some ham. Any way to counter the salt - other than what I've already done? My kidneys hurt too - and I keep having to run to the bathroom. What goes in - instantly comes out - can't seem to hold fluids. But, real bad edema.

I hate to go run up another ER bill. My deductable is high for those kind of visits. I just got out of there last week. I haven't had any follow up visits yet. But, it does look like I'm going to get to see Dr. Goodman at Mayo. Yayyyyy!

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Okay, just had my first ER visit for this illness. I thought I was having a heart attack. My bp was unbealivably high and tachy was awful, I found it hard to breathe (but my oxygen was fine) and I had chest pain.

Dear issie,

So sorry you went through this, it's awful, I know. Especially the difficulty breathing. I also have EDS and the nitro drip has helped a bit in the past. I sincerely hope the storm has passed and that you're feeling much better. BTW, did they use pulse oximetry or an arterial blood draw to check your oxygen? My numbers can vary enormously (oximetry and blood gases).

Hugs,

Victoria

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It was just the pulse oximetry. How does that make a difference? That eposide I was having yesterday showed my oxygen low with the pulse oximetry - so I slept with my oxygen last night. It made a huge difference. I feel allot better today. I also took the magnesium and took an allergy pill and the tramadol and muscle relxr. So, between it all, I got a good nights sleep. We'll see how the bp and pulse does today. Maybe the worst of this eposiode is over. I think the magnesium helped with bringing the bp down. The propranalol did not work. It made me feel worse. Probably because it activated the mast cells and a histamine release - since it's a beta blocker. Trial and error - we have to have allot of them to figure out what works for us. Dont we?

Thank you for your well wishes and hugs, it means allot to me that others care and I'm not in the boat by myself.

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It was just the pulse oximetry. How does that make a difference? That eposide I was having yesterday showed my oxygen low with the pulse oximetry - so I slept with my oxygen last night. It made a huge difference. I feel allot better today.

Arterial blood gases are precise, very accurate. My O2 is often low with oximetry, much lower with ABG. But I also have times when I feel like it's really low and pulse ox shows 94-96 which is considered normal. My O2 bottoms out when I'm standing but I don't pretend to understand the dynamics.

I'm happy to hear you got a good night's sleep and I hope your BP and pulse are much better today. I've been taking magnesium for about a year now and I think we may benefit from it. I'm sitting in my recliner and my BP is 116/30, but my HR is only 96. If I were to stand right now I'd get a pulse error because my HR goes sky high and my cuff can't read it. I also haven't had good luck with any of the cardiac meds. It sure would be nice to figure out exactly what works, wouldn't it?

Hang in there,

Victoria

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  • 2 weeks later...

Since imbalances in nitric oxide bioavailability and endothelial versus neuronal levels and nitrergic receptors are all implicated in some forms of POTS its not overl surprising that it helped. I know two people that take supplements for nitric oxide - taurine as an example. And it helps them.

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