Help!

[Ashelton80]

Last week after too much traveling and an intense accupressure massage I am experiencing a pretty severe "crash". At first my sympathetic's were going nuts with huge adrenaline surges which would send my heart rate through the roof and my bp up to 140/110 with sweating, tremors, etc. Basically a huge panic attack for a few nights in a row. Now, I feel like a wet dish rag weak, limp, shaky, etc. I have also noticed that my bp is now dropping even upon sitting up. I will be around 117/75 and I will sit up and take and it will be 100/75. Just the systolic seems to be dropping. I am so upset and devastated since this comes after a long period of being somewhat stable. What do I do?? I am not on any medication but have a prescription for Propranolol waiting on me at Walgreens. I am so confused as to what to do to help myself at this point. I am now scared to take the beta blocker since my bp seems to be dropping. Has anyone experienced this or have any suggestions? Please help!

[runningshoe]

I would suggest you rest and salt load - that helps me when things bounce around.

[nmorgen]

Sorry to hear about your set back. What is your pulse doing when your bp is low? I get this sometimes myself. I'm on clonidine, so I don't know about the beta blocker. I know that for me the clonidine doesn't really lower my bp, but it does lower my pulse. You should call your prescribing dr and see what they think about the beta blocker and the symptoms you are having. You might be a little dehydrated, so up your liquids. I hope you get to feeling better.

[issie]

Beta Blockers will lower your BP. Propranolol is also given for anxiety. Alot of people take it before acting or a speech. It was suggested to me to try it with the Florineff. One to counter act the other. I don't know if you could counter act the effects of the lowering of your heart rate with the beta blocker with just salt. So, I'm not sure that's the way to go right now. As for the panic attacks - some people us Ativan when that happens - I have a real mild tranquilizer called Serax. I don't take it unless I'm REALLLLL bad. Because it slows you down and could potentially drop your BP too. But, I hate the panic feels - it could be related to a hyper response from too much noriephi. That is pretty common with POTS patients. If you have this type of POTS - beta blockers are not recommended. I feel like I do have this type and I've tried 4 different kinds and couldn't use any of them. The Florineff by itself raised my BP too much and gave me a headache. (I tend to have miagraines too, and that drug will make them worse.) So, they were thinking that the combination of the two might counter act each other enough to not have issues with either. I've been too afraid to try it. I cope with alot of hemopathy things. There is a real good one by Standard Enzyme Co. called Anti Stress. It is my main stay. It really works for me.

[Ashelton80]

Thanks for the suggestions! I did chug a bottle of water and a gatarade and seem to be feeling a tad better. I just felt like I couldn't even lift my head off of my pillow. I also haven't slept much in the past week so I know that is playing a huge role as well. It just all seems to be a vicious cycle. At times I am VERY hyperadrenergic. Actually that seems to be how this all very slowly progressed towards full blown POTS. I definitely think I have low blood volume problems, but I feel as if either too much norepinephrine or a super sensitivity to what I have that really landed me here. Does that make sense?

My mom has had all of these similar symptoms and problems except her's was more ariathymia with a little bit of a fast pulse versus tachycardia. She lost tons of weight, panic attacks, etc. Her cardiologist put her on a beta blocker to block the effects of her out of control sympathetic nervous system and thing improved quite a bit for her after that.

This is the only reason I feel like maybe it's worth a shot with the beta blocker's as I do feel like some of this seems genetic from her. To answer your question my pulse still rises when my bp seems to be dropping a bit. When I had my testing done at Vanderbilt my pulse was running 150 at 10 minutes and my bp stayed pretty stable or a little high for me and the pulse pressure would narrow.

[runningshoe]

The mainstay of my drs plan for me has been salt loading, florinef and betablockers. One does affect the other and it is a balancing act. The salt and florinef help keep bp up and the bblocker keeps you from being tachy but can lower your bp...tricky to balance. The key is to take small steps with these meds and be monitored as you find the right balance. I am 4 years in at this point and have learned that sometimes I can't control the changes - they come with a wacky nervous system. But sometimes I can. Numerous times it has been recommended to me that the salt loading helps overall because it increases the blood volume which doesn't set off that oh no I have no blood in my brain thing. I too can feel totally overstimulated and definitely recommend getting a script for ativan or something similar to help wind down on the nights when you feel like your body is racing even when you are trying to rest. Do you have good dr who you can call and talk to as you make adjustments. It is key to have a pots dr!

[Ashelton80]

The mainstay of my drs plan for me has been salt loading, florinef and betablockers. One does affect the other and it is a balancing act. The salt and florinef help keep bp up and the bblocker keeps you from being tachy but can lower your bp...tricky to balance. The key is to take small steps with these meds and be monitored as you find the right balance. I am 4 years in at this point and have learned that sometimes I can't control the changes - they come with a wacky nervous system. But sometimes I can. Numerous times it has been recommended to me that the salt loading helps overall because it increases the blood volume which doesn't set off that oh no I have no blood in my brain thing. I too can feel totally overstimulated and definitely recommend getting a script for ativan or something similar to help wind down on the nights when you feel like your body is racing even when you are trying to rest. Do you have good dr who you can call and talk to as you make adjustments. It is key to have a pots dr!

Hey Lina, yes the doctor who diagnosed me at Vanderbilt is still my dr. I wouldn't say she is great, but I guess she is ok. I tried the Florinef and immediately noticed sweaty palms and when I tried to lay down to sleep my muscles would spasm and twitch. I then tossed and turned all night long. I have seen where the Florinef can activate the sympathetic's a little so I guess that's where the beta blocker's come in and try to help calm some of that down. It just seems too overwhelming to treat this with meds. I'm just not sure it's possible to balance the nervous system that way. So, I tend to do nothing and things usually improve on their own until I slack off because I feel better and have a crash like I am right now.

How would you say you are feeling on your meds? Have they given you relief or do you feel as if you are constantly having to change things around? Oh and I do have a script of xanax from my primary care dr. that I will use if I really need them. They do help when I start this panicky stuff at night. It's funny that my body will calm down and I won't need them for months and months. Thanks so much for your replies!

Ashley

[nmorgen]

Hi Ashelton80,

Maybe you could try taking half or even a fourth of the dose of beta blocker. If you feel it could help you it's worth a shot. It sounds like you have hyper POTs. I thought that salt loading doesn't really help the hyper POTs. Good luck. I hope you start to feel better.

[Ashelton80]

Hi Ashelton80,

Maybe you could try taking half or even a fourth of the dose of beta blocker. If you feel it could help you it's worth a shot. It sounds like you have hyper POTs. I thought that salt loading doesn't really help the hyper POTs. Good luck. I hope you start to feel better.

I have definitely thought about taking a 5mg dose of the propranolol just to see what happens. Hopefully with that small of a dose if I did have a bad reaction it wouldn't be to disastrous. Yes, I agree that I feel like I am VERY hyperadrenergic. Those were my first symptoms really. The shaky, tremor, adrenaline, etc. I thought for a long time I was just having panic attacks, but I always felt they were coming from a physiological place and not a psychosomatic place. So hyper pots isn't supposed to have low blood volume? I definitely notice a difference when I chug water and salt. Like a huge difference! Actually looking back when I ended up in the ER they gave me fluids and an ACTH stim test. I felt sooo much better afterwards and could not figure out which one made me feel better, but I'm sure now that is was the fluids. I would almost love to find someone to do IV fluids on me a couple times a week, especially when I get this bad. I wonder if anyone does that? Thanks for your response

Ashley

[runningshoe]

So...I can have good months and bad months. Things like the weather, exercising, too much strain on my body etc will change things. Plus since Dec. I have been taking antibiotics for Lyme which my neurologist thinks caused the pots. With Lyme treatment everything gets messed up - you feel worse before getting better. So I am not a great example at this point. But before that I was relatively well controlled on salt and meds. Hang in there. By the way for salt I drink high quality (no additives) chicken broth or sea salt mixed into water. I think the sugar in Gatorade would make me feel worse?? Things will get better!