Derek1987

On 5/18/2024 at 1:09 AM, Sea otter said:

@Derek1987 Autonomic nervous system regulates also vestibular system. I have some kind of vertigo all the time, I stopped driving from the moment my symptoms started, I have symptoms also when I am sitting. It's hard even as passanger. For a lot of folks sitting + sensory overload + motion sickness are triggers. That's why they have problems with car rides, especially long ones. 

Is there anything that can be done? Vestibular is a new term to me. Who will diagnose or investigate this?

2 hours ago, Pistol said:

Yes @Derek1987, I am familiar with all of the above!

Have doctors explained what exactly this is to you? I mean there's gotta be some type of root right..  Not enough blood in the head? I don't know. 

I get out of breath bad. No fainting from doing that. But I did change a light bulb a month ago. I got extremely nauseated for hours. Don't understand the correlation but I know that's what made me sick. But yeah my arms start burning lifting them up. Like it's abnormal. Can't do it long at all. 

On 5/14/2024 at 3:12 PM, Macho319 said:

@Derek1987 No. Even though it can be a side effect no explanation was given by the Director of Heart Failure team at the Cleveland Clinic. No one has answers for anything that is happening to me. It's unbelievable. I hope you're doing ok. 

I feel like this. Nobody knows what's happening to me. Tonight I'm taking a sleep study to see if I have narcolepsy. I don't think I have that. I think the fatigue comes from my adrenal gland issues. But thats another thing they couldn't tell me about. They know they aren't producing enough aldosterone and renin but he was like "no idea what's causing this". So I'm left with no answers or remedies. Hope you are doing alright as well. This is very hard to deal with. 

I don't know if this is pots related. I don't drive much but I had to today because my wife hurt her leg. I was definitely getting adrenaline overload. Moments of breath taken away. But I was also feeling dizzy. I think from looking at the stripes on the road go by. Not sure. I took notice how my eyes were in constant movement too. 

I also feel like my balance is going away if I brush my teeth too hard. I've triggered it shaving before as well. Or when I close my eyes and wash shampoo out of my hair. 

I guess this is another one of those "does this happen to you?" Posts. 

I first noticed it a couple of weeks ago during an adrenaline dump. The palms of my hands and the bottom of my feet have a weird sensation. It's not quite tingling. Maybe it is? I can't really put it into words. But it's been happening daily even with no adrenaline attacks. 

Yall think this is possibly pots related? I've also had muscles twitching all over my body for years, not long after I was diagnosed. So my body has been doing weird things for a long time now. Idk. I'm gonna bring it up to my doctor when I see him in a month. Just curious if anyone else has been through this.

Edit: I feel it now and honestly my forehead seems slightly numb both sides. And my scalp feels tinglyish. 

On 3/18/2024 at 2:22 PM, Macho319 said:

@Derek1987Florinef put me into acute heart failure preserved ejection fraction. It made me feel horrible! I knew it was the drug so I stopped it and retested and now I'm not in heart failure anymore. I also read heart failure is a side effect of Florinef as well .

Wow. Crazy. Did they explain why?

On 4/18/2024 at 12:37 PM, Macho319 said:

@Derek1987 Did any of what the doc suggested, help? If so how have you improved? 

Didn't help me. Doesn't mean it won't work for someone else though. 

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).

Its always on my right cheek. Gets hot. Turns red. It's been doing it for years but really started ramping up the past month.

I also feel miserable with this symptom. I don't know how to put it into words. 

I think it's adrenal gland issues. Idk. Anyone got experience with this?

9 hours ago, TCP said:

I can’t have caffeine as it overstimulates my nervous system. 

How have you been surviving with no energy?

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? 

So yeah the last time I had bad diarrhea, I was definitely on the verge of fainting. Sorry TMI. This is my first colonoscopy. I am guessing I'll be drinking magnesium citrate. Is there a way to avoid potentially fainting from this?

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. 

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. 

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. 

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 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?

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. 

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. 

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? 

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?

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. 

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?

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.