kalamazoo Posted February 3, 2012 Report Share Posted February 3, 2012 Please tell me someone else has these horrible crippling 'panic attacks'? I've had them for years but now because of my POTS and other health issues, they're out of control. My heart starts throbbing and racing to about 160 at least, my blood pressure goes crazy and I feel flushed and extremely dizzy. It would be nice to know some one experiences this as I do. Quote Link to comment Share on other sites More sharing options...
puppylove Posted February 3, 2012 Report Share Posted February 3, 2012 Do you think you might be having adrenaline surges instead of panic attacks? What I used to think were panic attacks are really surges because they wake me during my sleep which panic attacks would not do. When do you notice it happens and are you anxious during it? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 Kal, from what I have read many of us do. It is not necessarily a panic attack but a pots attack, feels the same I imagine only potsies have a reason they are feeling this way. I take celexa to deal with this and it has helped tremendously. It is your adrenaline trying to compensate for lack of blood flow to the brain. They are terrifying in fact I don't think there is even an appropriate word to describe the amount of fear associated with them. The best thing you can do is lay down with your feet up, try to stay calm, and realize that you aren't actually dying. Your body just thinks it is because there isn't enough blood flow to the brain. If I had to describe pots attacks, it would be experiencing the most horrifying moments before someone dies over and over again. There is a psychological component but it is not something that you can control entirely in your mind. Worrying about them only makes it worse though. There are also benzos that you can take to calm you down during these, but they can further lower blood pressure and have everlasting addictions which withdrawing from is like the worst panic atttack you could imagine x12+ hours. This is why I opted for the ssri. BTW my knowledge of benzo withdrawals is first hand and it makes pots attacks feel like a day at the spa. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 That's truly how I feel, like I'm dying .. It' comforting to know there are others out there who feel the same way, yet very unfortunate. The way my panic attacks come on can be random, to being hot to being a little anxious. When I have to get up in front of class or do anything that requires the little amount of work from my nerves they just go haywire. It's like my adrenaline doesn't have settings, it's either mildy always on or full blast. I never get a little nervous .. just pure blown fear. I can feel it in my stomach surge through my body then everything starts going into over drive. It's horrible. I've considered anti depressants but I'm worried they'll change my personality. I also have blood sugar issues and when my blood sugar is low, like in the morning my anxious is through the roof and so is my anxious. It's truly a terrible way to start the day. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 3, 2012 Report Share Posted February 3, 2012 Yes, me too! When I first got sick they were awful. Effexor 75 mg helped me. Sure sounds like adrenaline surges. Do you have a good doctor? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 Kal, I was worried about the personality change too. I kind of wish I wasn't because it caused me to go on longer than needed with these symptoms. Honestly, after taking them I am more like myself than I ever have been since pots started. They took me back to my actual personality and not this person who is freaking out all of the time. Also, I noticed you are new here, welcome! People on here are all very nice and can answer any question about autonomic dysfunction that you might have. Also, if you have any questions you can always message me personally. I know a lot of people on this forum were here for me when I was new and ill never forget how much they helped me. Do you have pots? What are your symptoms? And how were you diagnosed? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 No I don't, I'm still on the hunt. (5 years now) I live in Alaska, so my options are limited, most doctors here don't even know what I'm talking about. I worry about taking antidepressants, I've taking prozac and zoloft before with only worsening of symptoms, but that was almost 10 years ago when I didn't have POTS or any other health issues. I'm just so at my wits end now that I'm desperate to try anything. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 Also celexa is different than an antidepressant, it is an anti anxiety. I took prozac (which is an anti depressant) before celexa and it made me hallucinate and did nothing for pots, so I feel ya there sister. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 3, 2012 Report Share Posted February 3, 2012 If there is anything I can do, just say the word. I have an upside down sleep cycle, so I'm probably on Alaska time! because I am awake most of the night in Central time! If you lie down, does the attack get better? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 I'll have to look into celexa, I was taking clonozepam for quite some time but it didn't help with the pots at all, or really at all in general. And thanks for all the support, I haven't been able to find anyone who understands and then luckily I found this website, such a big help! Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 Also, just a heads up the nearest autonomic testing center with expert doctors in this area is in Arizona at the mayo clinic with Dr. Goodman, though, word is that they are opening a new one in California. I live in Washington and am going to see Dr. Goodman in 2 weeks. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 I used to live in Tucson but I was forced to move back home to Alaska because I cannot be in weather over 60, my legs swell so bad and all of the veins in my body start bulging under my skin, very painful. (erythromelalgia aggravated by POTS) so that commute is rather hard these days. I'm considering going to the Mayo clinic because I need a specialist because I can't find one here. I don't know too much about it but I know it's expensive lol. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 Ugh clonazepam, I was on it and it didn't do anything except make me feel that my body weighed 500lbs. Another thing to note is that treating pots (I assume this is what you have been diagnosed with?) Can provide some relief through medications such as a beta blocker, fludrocortisone, or midodrine. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 3, 2012 Report Share Posted February 3, 2012 I'll have to look into celexa, I was taking clonozepam for quite some time but it didn't help with the pots at all, or really at all in general. And thanks for all the support, I haven't been able to find anyone who understands and then luckily I found this website, such a big help!That's a clue there. If it were just panic attacks per se, the Klonopin would have controlled them most likely. I know exactly what you mean, too. Even after 9 years of this, tonight when I posted earlier, I was feeling like I was at death's door. issie was so kind and reached out. Then, my daughter came by and reminded me that the last time I tried doing the bath, washing the hair and drying it..... I collapsed the same way the NEXT day! Sad to say she remembers it but I don't! It's certainly a help knowing your not the only person in the world this is happening to.... Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 Very true! I never thought of that, despite it being so obvious lol. And I have trouble doing such little things too, it's sad and very disappointing. I barely blow dry my hair any more because it makes my arms feel extremely heavy and swollen and red. I've contemplating just cutting all my hair off and never washing it again! lol Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 Ugh clonazepam, I was on it and it didn't do anything except make me feel that my body weighed 500lbs. Another thing to note is that treating pots (I assume this is what you have been diagnosed with?) Can provide some relief through medications such as a beta blocker, fludrocortisone, or midodrine.Have you taken a beta blocker? My cardiologist has recommended this a time or two, I'm to scared to take something like this. Seems like the side effects could be worse than the initial issue .. But that may be my phobia of medications talking. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 A lot of insurance companies will cover the cost of your visit if they do not have a qualified person in the area, and honestly, the drs at the autonomic labs are really the only ones who know anything about this. If you do have insurance talk to your Dr and their customer service number to see what you need to do to get a referral. If you can get a referral approved it shouldn't cost any more than seeing your regular doctor. So really most of the cost is just getting down there and paying for a place to stay, car etc. To get a referral:1. Tell your doctor you want a referral to see a specialist in Arizona because they can do testing to determine the cause of my pots through testing that no one in this area is capable of such as qsart and sweat testing. And by finding the cause it can be better treated.2. Your doc will probably tell you no, at which point you ask him how he plans on solving each of the plethora of symptoms of pots and what he actually knows about the disease such as modern research on it and how he plans on getting you these necessary diagnostic tests. He most likely will not know much. Don't be afraid to argue with him and stand your ground. The squeakiest wheel gets the grease and there are countless stories of clueless drs on here. Don't let him brush you off. Your nervous system isn't working properly and this is serious. And don't be afraid to communicate that.3. The referral will go through an approval process. If it is denied by the insurance company, you can appeal it. 4. All of my drs threw me to the neurologist who basically threw his hands up wrote the referral, and it was approved without having to he appealed. Best bet is to get a referral from either cardiology or neurology. If they don't know what to do-it.kind of highlights the complexity of the disease in which case mayo appears more necessary. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 I've actually already been given a referral for the Mayo clinic, just have been worried about funds .. I can only go in the winter which I might do THIS winter, I feel like everything is progressing and there's nothing I can do. After you go, you should give me all the details of the tests and what not they conduct and the results, It's always nice to know what you're getting into especially with the type of anxiety this disease brings along ... Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 I started off with a beta blocker. It was metoplerol. It worked really well for me for about 6 months. Then, my body didn't want it anymore and started acting up. Following that, I went on midodrine which constricts your veins. It gave me chest pain but everyone has a different experience which is also true with the beta blocker. I currently take fludrocortisone or florinef which acts on the kidneys to retain fluid in order to increase blood volume thereby reducing pots symptoms. A prerequisite to all of these medications is sodium and inceased water intake if you have pots. I currently take 2 grams+ of sodium per day and drink around at lease 4 liters.of water and gatorade. Be careful only drinking water because it can flush out your electrolytes. I take the fludrocortisone to prevent me.from losing this water through urination. :/ Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 Wow that sounds extremely complicated ... See, the complication here is that my erythromelalgia is just as prominent as my POTS, with weirder symptoms that doctors are confused by. If I eat high salt meals my fingers tingle, my face flushes and my hands get red hot. So I eat a very health low sodium diet, plus sometimes my blood pressure gets really high 150/105 ish. Also, under my skin you can see my veins and the vasoconstriction and dilation. When I'm feeling relatively good my veins are seemingly invisible because they're vasoconstricted, but when I'm feeling bad and the swelling start they bulge out of the skin so bad and you can see blue lines every where. I eat a low salt diet to control my EM (erythromelalgia) with isn't good for my POTS, so it's a lose lose situation I feel like. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 How often do you get high bp's you should look up hyperadrenergic pots. Also, if you are having high bp's you might be able to get away with a beta blocker. They also help anxiety ill definitely let you know. There is a girl on here named Julie who also just saw Dr. G. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 I haven't been diagnosed any further than POTS, so I'm not sure which POTS I do have .. I've actually decided to go to the Mayo clinic in december (so far from now) Hopefully I can find a place to stay any everything but if it's only as expensive as a regular doctor, i'd rather spend my money there than waste it here on clueless doctors. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 I have a question, do your hands swell at night? I wake up with very very swollen hands, I can't wear rings at night anymore. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 3, 2012 Report Share Posted February 3, 2012 It's weird, I don't get the typical pots swelling but some people do. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 3, 2012 Author Report Share Posted February 3, 2012 Lucky you, it's rather troublesome .. but what part of this disease isn't! I have seen it mentioned a few times, but was curious. Quote Link to comment Share on other sites More sharing options...
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