Anyone else extremely fluid sensitive?

[p8d]

So, I am extremely sensitive to oral fluids.  My BP can rise 20-30 systolic after 16 ounces of fluids in a short time.  Recently I am battling high and low BP and high HR with the lows.  I am hyper POTS. which has really been bad this summer.  I can’t find patterns and am always reacting rather than managing beforehand.  Any body else this way or have ideas why?  I see the neuro next week and will discuss it with her.  Thanks.

[Pistol]

Hi - yes, I have hyperPOTS and am struggling with high and low BP this summer ( I actually posted something about my high BP just now ). I do not respond much to oral fluids - I drink Gatorade like crazy and it does nothing to prevent or help for flares. But IV fluids over several hours at a rate of 125 - 150 ml/hr fix me right up. I believe it must be the heat because there is nothing else that would cause this. My BP rises drastically when I am active  - 156/103 - but it also rises if I lie down too long. And then other times it drop very low - 80/40. I have tried increasing the BB but it did not work. Now I have increased my calcium channel blocker and it helps, but I am not sure for how long. I cannot find patterns either and also have been unable to prevent swings ( I ususally manage to adjust my activity levels to my bodies signals and can often prevent severe instabilities unless in a flare ). -- I hope your neuro will be able to figure things out and you can get better soon. 

[p8d]

@Pistol you sound much like me.  I have to pre-load with extra clonidine before I do anything.  Talking on the phone, exercise, anything upright.  I seem to be treating either the high sitting BP or the Hugh HR after being upright for longer than 10-30 minutes.  It’s so frustrating.  I have a standing order for IV fluids but seem to manage, or nor, with oral.

[Pistol]

I truly wish the medical community would read these posts. If fluids help us - then why not give them? There are so many of us who instantly feel better, and drinking fluids just does not do the same. --- I hope you feel better. Question: if fluids help you - why do you not get them routinely? I have heard from many members who get IV fluids weekly or more and it helps. ( In my case they help when I am in a flare but have not yet shown any effect in preventing flares if getting them routinely ). -- Yes @p8d - we do have a lot of symptoms in common. Let's see if we do better when it cools down?  

[Clueingforlooks]

Just read your post and can relate! My bp and adrenaline can easily go up quickly with just a bit of salt/electrolytes etc. it’s like I’m too sensitive to salt or something. Worst thing is, is that my bp goes too low as well and I need some salt and fluids for it but if I do then it just makes my adrenaline worse instead. Have you found any solutions so far? @p8d

[p8d]

@Clueingforlooks I still have lots of trouble with hypertension from doing anything much, talking on the phone, being upright, getting stressed because of filling out forms, dealing with insurance/pharmacies etc but switched the alpha blocker from clonidine to guanfacine ER.  The docs thought part of the trouble was rebound hypertension from the clonidine.  We have increased the beta, carvedilol, and I take a small dose prior to activity but it’s still a lot of reacting, including fluid loading at times. I started limiting fluids and completely stopped salt which lowers BP but my latest kidney function tests showed probable dehydration so...  I did a 24 hour blood pressure test that clearly showed the rise in BP while upright—161/93–but it went back down after sitting down and the overall balance of highs and lows was ok which is how they determine if it’s good control of BP or not for normal people. We are not normal and I doubt I ever will be again. Weather is a big influence on low BP so at the moment I am not dealing with that too much unless I have been upright too long or haven’t had enough fluid.  I am sorry that you too are struggling with this, I hope that you can find a better balance than I can.  

[Scout]

I relate to this a lot, but fluids don't cause hypertension, for me.

All I know, is if I don't have enough fluid, my BP goes very high. Drinking fluids usually mean my BP drops, which I think is the opposite of what is meant to happen.

It's a puzzle, really! 

Similar to yourself, though, I get hypertension when doing the mildest of tasks. At rest, my BP is low, usually very low, and it often drops suddenly too when I am walking or moving, and when it was hypertensive just seconds ago. 

Do you find the clonidine helps control the high BP much?

[Clueingforlooks]

16 hours ago, p8d said:

@Clueingforlooks I still have lots of trouble with hypertension from doing anything much, talking on the phone, being upright, getting stressed because of filling out forms, dealing with insurance/pharmacies etc but switched the alpha blocker from clonidine to guanfacine ER.  The docs thought part of the trouble was rebound hypertension from the clonidine.  We have increased the beta, carvedilol, and I take a small dose prior to activity but it’s still a lot of reacting, including fluid loading at times. I started limiting fluids and completely stopped salt which lowers BP but my latest kidney function tests showed probable dehydration so...  I did a 24 hour blood pressure test that clearly showed the rise in BP while upright—161/93–but it went back down after sitting down and the overall balance of highs and lows was ok which is how they determine if it’s good control of BP or not for normal people. We are not normal and I doubt I ever will be again. Weather is a big influence on low BP so at the moment I am not dealing with that too much unless I have been upright too long or haven’t had enough fluid.  I am sorry that you too are struggling with this, I hope that you can find a better balance than I can.  

Thanks for replying! Sorry to hear you’re still struggling with this. Definitely something that’s hard to manage. A lot of the time recently i feel like I have high bp when it’s only 110/75 and around that. I’m taking propranolol and fludrocortisone but it obviously doesn’t help enough. Tried Clonidine too but it was too bp lowering and caused a lot of fatigue. Hope we can work this out eventually. 

[Pistol]

@Clueingforlooks @p8d- I just spent a week in ICU for seizures and the monitor was right by my bedside. While there I took my usual POTS meds but was on bedrest. My HR ran between 50 and 85 but my BP was all over the place. It was 81/58 one minute and the next reading showed 143/92! All while lying in bed. One night the RN withheld my 37.5 mg Carvelidol b/c my BP was low as well as my HR. The next morning he did it again.  I was in tears. Thankfully by 7 am my doc came in and set them straight. We have learned that my BP is so chaotic that changing dosages all of the time makes it much worse. We do not mess with the beast unless either HR or BP are constantly abnormal. And as I said - in my case it changes all of the time.  To me it is mor eimportant to listen to my symptoms than to go by the numbers. If I feel weak, fatigued, sluggish - I need an infusion to bring me around b/c it will bring up my BP. When I am hyperadrenergic ( tremors, irritable, nauseous, brain fog, fast talking, blurred vision etc ) my BP is always high and - surprise - I need IV fluids to stabilize everything. Compared to years ago I function relatively well on my meds, IV fluids and a careful regimen of exercise and rest. I do drink a lot of herbal teas and broth as well as ginger ale but they do not do anything for my orthostatic stability - probably because I also have IC and pee everything out right away. --- I am a passionate supporter for IV fluids in refractory cases and am still very disappointed that the medical community remains skeptical in general, despite the blatant evidence of so many POTS sufferers benefitting from - even periodic - infusions. 

 

[Clueingforlooks]

@Pistol Sorry to hear that you had to be in hospital recently. 
IV fluids definitely used to make a difference to all my pots symptoms but now when I’ve had them or oral electrolytes/sodium it just adds to the adrenaline/fight or flight feeling I’m already having. Whether my bp is low or high. Then sometimes I feel hyper with low bp then if I try to increase bp it just gets worse. Very confusing! 
 

[p8d]

Oh @Pistol I am so sorry that you were in ICU for a week.  Yikes.  That’s scary that the nurse withheld your meds!  You are a nurse and know so much about your condition and treatments that  I am surprised (but not surprised) that he did it.  It’s so difficult dealing with medical personnel that think they know our bodies better than we do.  I hope that you are doing better now.

[Scout]

On 1/13/2020 at 8:07 PM, Pistol said:

@Clueingforlooks @p8d- I just spent a week in ICU for seizures and the monitor was right by my bedside. While there I took my usual POTS meds but was on bedrest. My HR ran between 50 and 85 but my BP was all over the place. It was 81/58 one minute and the next reading showed 143/92! All while lying in bed. One night the RN withheld my 37.5 mg Carvelidol b/c my BP was low as well as my HR. The next morning he did it again.  I was in tears. Thankfully by 7 am my doc came in and set them straight. We have learned that my BP is so chaotic that changing dosages all of the time makes it much worse. We do not mess with the beast unless either HR or BP are constantly abnormal. And as I said - in my case it changes all of the time.  To me it is mor eimportant to listen to my symptoms than to go by the numbers. If I feel weak, fatigued, sluggish - I need an infusion to bring me around b/c it will bring up my BP. When I am hyperadrenergic ( tremors, irritable, nauseous, brain fog, fast talking, blurred vision etc ) my BP is always high and - surprise - I need IV fluids to stabilize everything. Compared to years ago I function relatively well on my meds, IV fluids and a careful regimen of exercise and rest. I do drink a lot of herbal teas and broth as well as ginger ale but they do not do anything for my orthostatic stability - probably because I also have IC and pee everything out right away. --- I am a passionate supporter for IV fluids in refractory cases and am still very disappointed that the medical community remains skeptical in general, despite the blatant evidence of so many POTS sufferers benefitting from - even periodic - infusions. 

 

I'm so sorry you were in hospital recently @Pistol! I really hope you're doing better now? 

That RN withholding your meds makes me frustrated. So sorry that happened to you. I would have been emotional, too! 

 

[Pistol]

Thanks for asking @Scout. Yes, I am better and trying to get back to my normal level of activity. Be well yourself!!!!!

[Robert J]

In terms of fluids, I presently get 1 liter of standard sodium chloride IV 4 days a week run over 3 hours. My doctor added some potassium and many of my symptoms resolved however my problem is more with dehydration. Oral hydration just doesn’t work no matter how much I drink. Doc says it has something to do with vascular pressure and IV fluids help correct that. If I miss even a day I feel it.  I also take fludrocortisone to try to help me hang onto some sodium which helps with fluid retention. So fluid sensitivity seems part and parcel of this disorder but the key for me was stabilizing the vascular pressure.

[Clueingforlooks]

On 1/18/2020 at 4:35 AM, Robert J said:

In terms of fluids, I presently get 1 liter of standard sodium chloride IV 4 days a week run over 3 hours. My doctor added some potassium and many of my symptoms resolved however my problem is more with dehydration. Oral hydration just doesn’t work no matter how much I drink. Doc says it has something to do with vascular pressure and IV fluids help correct that. If I miss even a day I feel it.  I also take fludrocortisone to try to help me hang onto some sodium which helps with fluid retention. So fluid sensitivity seems part and parcel of this disorder but the key for me was stabilizing the vascular pressure.

Interesting, @Robert J so IV saline was the only way you stabilised vascular pressure? Does feel like that could be my problem yet saline still gives me head pressure and jittery feeling.

[Pistol]

5 hours ago, Clueingforlooks said:

Does feel like that could be my problem yet saline still gives me head pressure and jittery feeling.

@Clueingforlooks - this used to happen to me when they gave me Saline over 2-3 hours. Then we started to run it slower, over 6-8 hours, and the headaches and jitters disappeared. Then we switched to Lactated Ringer solution ( more electrolytes, more volume than Saline ) and it worked better yet.  Today the IV fluids are a necessity for me in order to function at all. 

[Robert J]

Although I’ve been sick for some time, my Dr just recently diagnosed me so I’m new at this. Do most people with COPS need IV fluids? I go to an infusion center where I sit next to patients in treatment for cancer, etc. at first I felt silly being here with my little bag of hydration- I’m not “really” sick. Yet, if I go more than 4-5 days without I end up in the ER getting pumped full of fluids.

[Clueingforlooks]

On 1/19/2020 at 8:35 PM, Pistol said:

@Clueingforlooks - this used to happen to me when they gave me Saline over 2-3 hours. Then we started to run it slower, over 6-8 hours, and the headaches and jitters disappeared. Then we switched to Lactated Ringer solution ( more electrolytes, more volume than Saline ) and it worked better yet.  Today the IV fluids are a necessity for me in order to function at all. 

That’s good to hear that it got better doing it slowly, I’ll talk to my doc about it.

hope you’re doing a bit better now!

[Pistol]

@Clueingforlooks - yes, I am much better, thanks for asking. I wanted to also tell you that my sister - who also has POTS - gets infusions through her PCP's office and they used to run one bag over 2 hours. she would start shaking, freezing and feeling extremely cold. This was b/c the fluids are colder than her body and ran in too fast. Now they run them over 6 hours and all is well. It is annoying to have to sit somewhere for that long to receive the fluids, but it is worth it to her b/c she feels like a normal person afterwards and can actually DO some things. 

[Clueingforlooks]

On 1/22/2020 at 9:07 PM, Pistol said:

@Clueingforlooks - yes, I am much better, thanks for asking. I wanted to also tell you that my sister - who also has POTS - gets infusions through her PCP's office and they used to run one bag over 2 hours. she would start shaking, freezing and feeling extremely cold. This was b/c the fluids are colder than her body and ran in too fast. Now they run them over 6 hours and all is well. It is annoying to have to sit somewhere for that long to receive the fluids, but it is worth it to her b/c she feels like a normal person afterwards and can actually DO some things. 

That’s good to hear. And also good to hear that slowing the fluids down helps your sister!