Need advice, reverse reaction to sedatives? Etc.

[Potsie1990]

Hello everyone!

 

I would like to get some insight and see if there is anyone else out there like myself. My POTS/dys is being exasperated by the current heatwave here in Los Angeles. I’ve had pots and dys symptoms my whole life and was finally recently diagnosed last April after an extemely bad recurrence. But unfortunately, the doctors can just tell me I have it, but can’t tell why or what type or give me any real insight on what I can do.

anyway: my entire life, I have not been able to take certain drugs. Please excuse my formatting and typing. I am so weak but I’m trying my hardest to type. Please bare with me. I am new to this. I knew i had something my whole life but I am just learning the tips and tricks for Dys/pots life

Reglan, Phenergran, Benadryl, Tylenol PM, NyQuil, Alka seltzer cold meds, basically anything that has a sedative, decongestant etc causes extreme shaking and vasovagal response. Anxiety, nausea, vomiting, diarrhea, shortness of breath, tachy. Etc. even some anti anxiety meds will cause restlessness instead of calming me. It’s so beyond exhausting.

Coffee used to stimulate me, and now it just turns me into a sedated zombie. I can’t sleep, it will make my mind restless but my body will be sedated. Like I will just lay there with my eyes open and unable to really do anything. 

The only thing I can take during an episode is 4mg of Mylan Odansetron (the only manufacturer I can tolerate) and .5mg Ativan. It’s the only anti anxiety med I can tolerate as well but gives me horrible pots the next day. But this is only during a shaking/nauseous episode, not low BP weakness episode.

I am so weak, dizzy and feeling so bad, my BP is 87/58 when laying down (I’m symptomatic below 95) and when I’m up I’m lucky these days to hit 95-100 sys. Even the last few nights, I get a horrible sensation in my body where it’s restless and I have to keep moving. It’s so annoying because I’m so tired and I want to sleep but my body just feels squirmy. 

My doctor who wasn’t the most knowledgeable on POTS and my reactions to meds (he just wrote me off like I didn’t know my body) gave me midodrine. Basically he threw it at me and told me that’s all he can do. 

now luckily for me I already hit my deductible, but I’m like 90% sure the midodrine is going to give me the same horrible response since it’s a vasoconstrictor. It’s not so much I don’t want to end up in the hopistal, because my lovely basic pots educated ER doctor who suspected POTS in the first place would most likely be there or on call... but I just don’t want to go through another episode right now. I’m exhausted beyond belief.

My family was just here staying with us and my dad forced me to watch a Netflix documentary called the magic pill where they basically say a ketogenic diet will cure you of your disease and cancer. While watching this, he was drunk and had the nerve to tell me that I did this to myself by recently adopting a “‘more” vegetarian/vegan lifestyle. (My blood tests show no deficiencies other than the common Vit D btw and I’ve been sick my whole life, even while eating “normal”). He is not mentally stable and has ptsd from Iraq and Afghanistan war so I know to take it with a grain of salt, but he said while yelling at me “THEN HOW COME ITS JUST YOU! Your mom is fine, I’m fine, we are all fine. It’s just YOU!”  & The funny part is,  low blood pressure runs in his family and he never told me until a few months ago after I told him what the doctor found. So actually, it could be genetic. Lol but I spent days crying because it hit me right in the part of my soul that is still healing from my childhood.  That’s a whole other can of worms, but let me just tell you I am physically and mentally exhausted. Sorry about the rant! Lol 

i tried calling around to see if anyone would give me an IV at an urgent care and they said no because of my condition. Lol GREAT. 

Im drinking fluids, increasing salt, wearing compression stockings. Any advice would be appreciated, or if you can share your experience I’d love to know what you do. I’m so exhausted. I was supposed to go to dinner tonight but now I can’t. I’m so upset. 

Im literally about to order a cane and a scooter on amazon right now. I don’t care. Lol I’m so done. I’m exhausted. 

[StayAtHomeMom]

I have odd reactions to most medications. If there is an odd side effect I get it. I can't take prilosec because I feel like I am gonna have a heart attack. (Spent 3 days like this before I figured out it was that med). But then sometimes meds work just fine. 

I take midodrine. Up to 5mg 3X a day. I get the tingling sensation. Mostly is my scalp but I can get it other places like one cheek or my shins. I mostly just deal with it because it helps so much. 

I am the odd man out in my family as well. My husband doesn't wrap his mind around and sometimes says things that make me mad. Today we went Pokémon go hunting. And accidently got sucked into raid hopping for a legendary. He kept wanting to go back and get the van because I was walking so slow and he wanted to keep up with the large crowd. I took offense. I am stubborn and do what I want to even if I am a little slower at it. 

I have plans to start the keto diet soon. I need to find a few supplements first so I can avoid the keto flu. My weight has gone up over 30lbs in the last year. My mother in law swears by it. She has lost 90 in 9 months. My thing is by cutting the bread out it may make my stomach feel better. And added bonus of disappearing the weight with no exercise required. 

You father sounds like my husband's family. I just let most of it go in one ear and out the other. As long as they don't force my children into their way of thinking they are entitled to theirs.

Things will get better. I am actually considering a set of double crutches that can be folded down into a backpack for my bad days. There has been a few days in the past month where I really wanted them so I am thinking I may have to buy it soon. Even if I never use them at least I have them.

Stay strong and positive. Find your triggers. And then avoid them like the plague. Everyone's seems to be slightly different. But if you can find them and avoid them it gets loads better. I have issues with heat, sun, multitasking (like walking and talking), loud noises and crowd noises, and physical exertion while standing (like sweeping, but not vacuuming). 

[Potsie1990]

Thanks for the reply. Yes, now that you mention it, I forgot famotodine gives me heart Palps too. Yay. Lol 

You know, personally, I am aware that some diets work differently for people. And I’ve always understood that diet is very personal and is absolutely not a one size fits all. With my mild gastroparesis meat specifically gives me a rotten feeling in my stomach and takes forever to digest so it’s an easy thing for me to give up. Veggies and fruits with low fat anything digests much faster and will actually clear out of my stomach to where I can feel hungry again after eating. I felt my best when I went high raw vegan for a few months and actually nearly fully recovered until my thyroid meds were adjusted and triggered another major episode (sent me into hyperT) I still have not come out of. I went back to eating normal vegetarian and vegan cooked foods and introduced processed high sodium things and don’t feel good at all. But, for others veggies and added fiber may not be good, so it’s about finding what works for you.

 

Let me know how you’re double crutches work for you. I actually just ordered two canes, one foldable to keep in my car and another for walking at home. It is what it is. If it will help us, screw what anyone else thinks. 

And yes, I’ve learned how horrible people can be. I actually distanced myself from a lot of “friends” and family because I found out who they really were when I needed them the most. Oh well. 

Maybe I’ll get the courage to try the midodrine. Do you take it when you have things to do? Or do you just take it and sit up while laying down? 

 

Thanks and and I hope you feel better. Sounds like a rough day 

[StayAtHomeMom]

11 hours ago, Potsie1990 said:

Maybe I’ll get the courage to try the midodrine. Do you take it when you have things to do? Or do you just take it and sit up while laying down? 

I take it when I have things to do. I work most days (at least a few hours in an office) and take care of my husband and 2 teenagers (who are homeschooled) so I take it almost everyday. I usually only take it once or twice a day though. If you lay down with it, it can cause your blood pressure to skyrocket. I was scared to try it at first but it really has helped so much. Currently it is the only med working. My metoperlol is barely working if at all so I rely heavily on my midodrine. Start by cutting your pill in half or smaller and my doctor said the wonderful thing is I don't have to take it. I can adjust to how I need to take it. Just make sure I take my last dose more than 5 hours before I go to bed or lay down for the night. 

A few weeks ago I was able to go to the Ark Encounter in Kentucky with my husband's family. (Very religious family) and I walked the museum. I had a blast. Even took 1300 pictures 😊 no way would have I been able to do that without my midodrine. I did take it easy and my husband's family was patient ( both my sister in laws have invisible diseases too). But I got to do something out of the ordinary.

[WinterSown]

I'm sorry you are going through this. Lack of support from your own family can be very depressing. I am very concerned about your father's behavior and I think you should reach out to an organization that assists families. There will be someone on the line who can listen and talk to you about how to reduce or avoid confrontations. https://al-anon.org/

 

 

[yogini]

Midodrine totally wears off in a few hours.  So I think it is worth trying.  Have you tried wearing compression hose?

[Potsie1990]

5 hours ago, WinterSown said:

I'm sorry you are going through this. Lack of support from your own family can be very depressing. I am very concerned about your father's behavior and I think you should reach out to an organization that assists families. There will be someone on the line who can listen and talk to you about how to reduce or avoid confrontations. https://al-anon.org/

 

 

Thank you! I’ll go check it out. 

[Potsie1990]

4 hours ago, yogini said:

Midodrine totally wears off in a few hours.  So I think it is worth trying.  Have you tried wearing compression hose?

I do wear the stockings... but honestly it’s the muscle weakness that’s really getting to me lately, and I don’t really see an improvement when I’m wearing them. I do it anyway just to cover my bases. I wonder if they are the right compression? Lol I got them from amazon, who knows if they are really tested. Thanks for the recommendation. 

[Potsie1990]

7 hours ago, StayAtHomeMom said:

I take it when I have things to do. I work most days (at least a few hours in an office) and take care of my husband and 2 teenagers (who are homeschooled) so I take it almost everyday. I usually only take it once or twice a day though. If you lay down with it, it can cause your blood pressure to skyrocket. I was scared to try it at first but it really has helped so much. Currently it is the only med working. My metoperlol is barely working if at all so I rely heavily on my midodrine. Start by cutting your pill in half or smaller and my doctor said the wonderful thing is I don't have to take it. I can adjust to how I need to take it. Just make sure I take my last dose more than 5 hours before I go to bed or lay down for the night. 

A few weeks ago I was able to go to the Ark Encounter in Kentucky with my husband's family. (Very religious family) and I walked the museum. I had a blast. Even took 1300 pictures 😊 no way would have I been able to do that without my midodrine. I did take it easy and my husband's family was patient ( both my sister in laws have invisible diseases too). But I got to do something out of the ordinary.

Oh how exciting! I’m glad you were able to do all of that! Well that gives me hope. Maybe I will just clear my schedule and try it out. It’s nice to know it only lasts 4 hours and I can cut the pill to test it out first. 

[yogini]

1 hour ago, Potsie1990 said:

I do wear the stockings... but honestly it’s the muscle weakness that’s really getting to me lately, and I don’t really see an improvement when I’m wearing them. I do it anyway just to cover my bases. I wonder if they are the right compression? Lol I got them from amazon, who knows if they are really tested. Thanks for the recommendation. 

Try brightlifedirect.com.  Their store brand has good compression and its cheap. Their customer service will help you with fitting, which is also important. 30-40 is the recommended version, though your doctor can advise best.  It's not super common to get IVs to treat POTS.  I would definitely try to find another doctor if yours doesn't know about POTS.  Look on the Dinet site and see if there is someone in your area.  On cutting the pill, at least check with your pharmacist before you try it. Not all pills and brands can be cut.

[Pistol]

@Potsie1990 - I took midodrine years ago. In my case it was not effective due to the kind of POTS I have but I just wanted to let you know that I tolerated it OK, no really bad side effects. Just this tingly feeling in my scalp but that is a normal effect. So - I don't believe you need to be afraid to take it. And yes - it leaves you system really quickly.