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Derek1987

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Posts posted by Derek1987

  1. I've been taking it for 3 years or so. My new autonomic doc says my adrenal glands need a break from it. I forgot her exact reasoning. Sorry brain fog.  Like it could mess my glands up permanently. There wasn't any test indicating this was a reason for me stopping it or anything. 

    How long have you guys been on it? (If you're on it).

     

     

     

  2. So I was on coreg 25mg twice a day. If I drank caffeine and I'm talking a couple sips, my heart would start fluttering, bad anxiety, really elevated blood pressure. 

    Now I'm on 6.25mg twice a day. I'm reducing it to get onto something else. Weaning off. I've tried caffeine again and I'm still having issues but not as bad. It's still bad but not as bad if that makes sense. I don't get heart palpitations. I can drink a bit more. Not a whole can or even half but at least a fourth. My anxiety isn't quite as bad and the blood pressure doesn't go as high as it did before on the higher dose.

    I'm thinking pots along with the coreg made it worse on me in tolerating caffeine. Do you have a theory on why that might be? What do yall think? 

     

  3. On 10/5/2023 at 1:07 PM, Derek1987 said:

    Thanks for the response. And when you said healed, were you including the barrets esophagus? I had read there was no cure but idk. I didn't even get to talk to the doctor after my test. They just sent me a generic piece of mail stating what they found. 

    @Pistol bump. 

     

    Also I messed myself up. I got sick with fever. Took 400mg Ibuprofen 2 days in a row. My whole stomach area burned for days. Now some blood is coming out when wiping. Sorry TMI. I need to make a doctor appointment to see if I can get something to numb my stomach. That lidocaine you mentioned maybe. 

  4. 9 hours ago, Sarah Tee said:

    @Derek1987, oh dear, I’m so sorry you are still in pain. Looks like I really put my foot in it with that suggestion!

    Lying awake is the pits.

    No worries. They told me yesterday on the phone I had some type of hernia. Can't remember the details because my memory is bad. Just that it's not complicating anything. Not sure if I'm getting pain from that too. Probably. 

  5. 6 hours ago, Pistol said:

    I still take Protonix and will have to forever. Since HPOTS is chronic so are the GI symptoms, so the protonix keeps the stomach acid at bay to prevent ulcers and inflammation. So far so good for me! 

    Thanks for the response. And when you said healed, were you including the barrets esophagus? I had read there was no cure but idk. I didn't even get to talk to the doctor after my test. They just sent me a generic piece of mail stating what they found. 

  6. 9 hours ago, Sarah Tee said:

    I seem to remember that pain can cause blood pressure to go up. Could it be that the medication has brought your pain levels down and this has led to your blood pressure coming down a bit?

    Whatever the reason, I’m glad you had some good news. So often medications can have side effects or a negative effect on a different condition or symptom.

    I don't think so because I've been in pain daily lol. I couldn't get to sleep until after 3am because of the pain last night. And I check my pressure several times a day. And it's just been consistently good since I started taking protonix. Even with the pain. 

    I'm going to bring it up to the doctor and see what he says, if anything. I just think there's some weird pots connection. 

  7. 7 hours ago, Pistol said:

    @Derek1987 The ulcers and the barrett's were healed ( and proven so by several follow-up EGD's ) by a mixture of Protonix, Carafate and what they call GI cocktail, which consists of Mylanta, viscous lidocaine ( numbs the esophagus lining ) and phenobarbital. I also became disabled, found the right medication regimen for POTS and adjusted my dietary habits. All this together helped things to heal. 

    Oh dang. That's a lot of stuff. Do you still take protonix or anything for it since adrenaline(hyper pots) is the source?

  8. 22 hours ago, Pistol said:

    @Derek1987 I too have HPOTS, and I take Protonix as well, also for ulcers and barrett's esophagus ( now completely healed ). The GI problems were said to be a result from the sympathetic overcompensation - in other words high adrenaline all the time which is like being under severe stress always. 

    Protonix does not help for POTS but can help with the GI symptoms that come with it. 

    Ah I see. Makes sense makes sense. Are you saying your barrets was healed? Or just the ulcers. I'm in a lot of pain from the ulcers, I can't sleep. They just did a CT scan on me to get a better look at what's going on. They also put me on 20mg of dicyclomine. It makes me so sleepy though. I haven't been able to take it as prescribed. 

  9. So I was diagnosed with hyper pots. My blood pressure is always elevated. Now I'm on protonix for ulcers and something called barrets esophagus. Since taking protonix, my blood pressure is closer to normal and I'm taking one fourth of what I was taking(coreg). 

     

    Is there any correlation with stomach issues and hyper pots? My blood pressure is much better. I was taking 25mg of coreg twice a day. Now I'm taking 12.5mg once a day. 

    I still suffer with all of the other issues but at least my blood pressure has improved. 

     

     

  10. Honestly I can't remember some of the conversation because of brain fog. But yeah I had to wait 18 months to see an autonomic doctor because the first one quit or whatever. 

     

    I think the new doctor said something about inflammation of the vagus nerve. And to combat it I was prescribed Pepcid 40 mg twice a day. And Alpha lipoic acid 200mg 3x a day. I forgot how she said it works. But she said I'd be healed. I'd also have to give up dairy, gluten, and a couple other things. I'd have to look at the paper again. Sorry the memory is so bad. 

    But yeah have yall ever had this combo of meds? 

     

     

  11. 4 hours ago, MomtoGiuliana said:

    IV fluids help me too with this symptom, among others.  

    This may not help given the severity of your symptoms but another thing that has helped me in the past with this is lying on my back with my arms back behind me ( resting on the bed, like floating).  It requires you to breathe using your diaphragm only.  It can help to calm and relax the body.

    Have you ever had jump scare feelings as well?

     

  12. 13 hours ago, Pistol said:

    @Derek1987 I am, so sorry you are going through this! When I went through this my doc would put me in the hospital on IV fluids and lorazepam. Ususally that would fix it and I could go home the next day. Any idea what triggered it? Complete rest and withdrawing from any stimuli is important. 

    I think it's tiredness. But I think medicine actually triggered it. The er wrote me a script for tramadol because they think I messed up my insides from too much aspirin.(a lot of pain) I've been taking aspirin almost everyday because of the headaches from pots. So I'm waiting to see the gastro doctor.

    But anyway I felt fine until I took the tramadol. Then I felt the adrenaline come on as the medicine kicked in. Then it just progressed. I've taken the pill a few times already with no issues so idk.

    I woke up today with some adrenaline still going. Small jump scare feelings. My left hand has been tingling all day which I know is apart of whatever is happening to me. I just feel exhausted now. My wife took over any responsibilities today. I feel like I need another day to get myself together. 

     

  13. I guess I'm having an adrenaline dump. An extreme one. I feel like I'm dying. Shaking, flushed, feel like I'm floating or moving, nausea, heart palpitations. I'm having horror movie jump scares with no triggers. I'm just looking crazy laying in the bed. I can't sleep. It'll physically cause me to jerk like I just got scared by a louse noise but nothing is happening to cause it. 

    Is there something doctors can look for to help this? This is scary. 

    @Pistolany insights?

  14. I've been feeling the worst I've ever felt this past week. I think it might be increased stress on top of just eating.

    When I eat, I start to feel so sick. Like torture. I don't know how to put it into words. The only symptoms I can describe would be flushing on one side of my face, fatigue. Heart seems to pump harder, nausea, and being out of breath. Being out of breath is getting worse as time goes on. 

    I don't know what's going on. I was in pure agony the other night. There's no words to describe it.This is new. those symptoms i described werent too strong or anything. It was the suffering I was feeling. 

     

    I'm getting other issues too. If I'm up too long, my right leg feels tight. And my right hand swells a little. I'm guessing it's blood pooling. But only one side of the body? This sound familiar?

    Just venting and seeing what you guys think. 

  15. On 2/20/2023 at 6:11 PM, MikeO said:

    I have a Posterior tibial artery (PTA) that's occluded in my left leg and developed some varicose veins in that area. Not sure i have a whole lot of words of wisdom outside of make sure you stay active (helps with the discomfort) over time i have more or less gotten used to it. If the pain really bothers you and was me i would get them taken care of.

    Thanks for the reply. Yes I need to be a lot more active. The problem is it makes me so sick. I'm wondering what ways I can improve circulation. 

     

    I'm actually getting pain in several areas on the right leg including my toes. My right leg has been swollen for about 3 years. My left leg has been normal. I'm wondering if that's another factor in causing this. I don't know why it's just my right leg swelling up. 

     

    I'm so tired of pots. 

     

     

  16. My calf has been hurting for about 2 months. I looked at the back of my leg and it looked all bruised up. I thought I might of had a blood clot.

    So I went to the ER. Blood work is fine and so was the ultrasound. But he did say I have varicose veins. 

    doctors here don't know what POTS is so I'm wondering if there's a relationship between POTS and varicose veins.

    it definitely hurts and even burns sometimes. What an annoyance. Any words of wisdom? All I got was put heat on it and it's possible to get them removed if I wanted to do that. 

  17. So lately in the mornings coreg has been making me lightheaded. Sometimes so lightheaded I can't function. It used to do this a long time ago until I was prescribed florinef. Then it stopped. I was prescribed florinef because my aldosterone was too low. This seemed to correct the issue. It's been a couple years. Now the issue is back. My blood pressure is fine during these episodes. Sometimes even a bit high (hyper pots). But when it gets really bad I have to take a midodrine which gets me back on track. 

    I find it weird that it's only in the morning. Anybody know why that might be? I don't have an autonomic doctor anymore because they quit. I can't see one until July 2023. So I'm just figuring out what maybe I can do until then. My primary care doctor has continued my medications while I wait on my new doctor. 

  18. On 8/6/2022 at 1:18 PM, DysautonmiaMatt said:

    I have Addison's disease. I am on Cortef. Do you need caffeine because of fatigue?  Before I was diagnosed I had horrible fatigue. Once on Cortef that greatly improved.

    https://www.goodhormonehealth.com/2014/08/19/your-adrenal-hormones/

    Yes I need it for fatigue. I saw an endocrinologist a couple of times. He took bloodwork twice to confirm I was actually low on renin and aldosterone. Basically he had no idea what was wrong with me. He was listing illnesses but saying I do not match them. I guess I was something new to him. He suggested florinef for one of the things I'm low on. I can't remember if it was aldosterone or renin it helps. But florinef did help with lightheadedness. 

  19. Just commenting on the soda/sugar connection. For me, sugar hasn't had any negative side effects. I can drink rootbeer with no caffeine and have no issues. But I do get the same anxiety and high blood pressure if I take medication with caffeine such as a BC powder. I've been eating chocolate candy to try and survive life. But I've stopped because it's definitely causing weight gain. I just don't know what else to do. 

    I've even tried decaf coffee. Again, my blood pressure goes up, chest gets tight, heart palpitations etc. Somehow caffeine in chocolate does not bother me. 

    I know my adrenal glands aren't working correctly with low renin and aldosterone. I wonder if there's a connection there and if there's anything I can do about it. 

  20. 29 minutes ago, MomtoGiuliana said:

    I have a low tolerance for caffeine and this got worse when I developed significant POTS symptoms 20 years ago.  I think this is not unusual, as it does stimulate the nervous system.  For me, even small amounts can affect my ability to sleep.  I can also develop a feeling of nervousness.  And it can cause more heart palpitations, for me.  

    Bummer. Yes my chest gets tight and my heart will jump and flutter or whatever. I forgot about that actually. I need something for energy sooooo bad. When I've trial tested drinking on a coke every so often, my anxiety would increase really bad. I would take the klonopin to reverse it. The strange thing is the klonopin would be like a dose on steroids as if I doubled the dose or something and I'd have to sleep. Weird. 

  21. 2 hours ago, Pistol said:

    Hello @Derek1987 - haven't heard from you in a while! - Caffeine is a nervous system stimulant, so it can trigger HPOTS symptoms. Strangely this does not occur in everyone, since I also have HPOTS but do just fine with one or two cups of coffee a day. My finding: anything that triggers your symptoms should be avoided. As disappointing as it is - it is necessary. There are many things and activities that I used to love but now have to avoid in order to avoid symptoms to become worse. 

    My autonomic specialist prescribed Ritalin for me years ago for the low energy and fatigue. I take it first thing in the morning and it gives me the boost I need. 

    Have you discussed the need for a boost from caffeine with your doctor? There may be other meds or supplements that are safe for you to take and get the same effect as you get from caffeine. 

    Good to hear from you again, Derek!

    Hello there. I've brought it to the attention of my specialist but nothing really came of it. She quit late last year. I've been waiting to see a new specialist. I won't see her until the end of August. 

    I'm not sure if I could be prescribed a stimulant and klonopin at the same time. I need something though. The klonopin comes from a psychiatrist. My anxiety was really bad then I discovered I had hyper pots a few months later. I just have a feeling that the klonopin is somehow causing the issues with caffeine. I'm going to try and get off of it. I had no idea that benzos were this hard to get off of. I don't want to be enslaved to this type of medicine anyway. 

     

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