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Heart Palpitations Forum
http://palps.chemicalforums.com/cgi-bin/YaBB.pl Heart Palpitations Forum >> Symptoms and other concerns >> RLR - Regarding my Physician and Dr's thoughts. http://palps.chemicalforums.com/cgi-bin/YaBB.pl?num=1327511538 Message started by Steff1573 on Jan 25th, 2012, 9:12am |
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Title: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Jan 25th, 2012, 9:12am Hi RLR, I went and saw my Psychiatrist yesterday and she has been talking with my Internal Medicine Physician. They want me tested for something called: Pheochromocytoma which has to do with the Adrenal Glands. I have had CT Scans (recent one was in August when I was Dx with Mono) but it didn't show anything wrong with the Adrenal Glands. But still my Psychiatrist and Internal Med dr think that this could be the cause of some of my symptoms. --- Fast heart rate w/ flushing and redness in face --- High blood pressure at times when I get the fast heart rate --- Nausea --- Burning sensations and paresthesias --- Weight loss --- Pulse is extremely elevated in the morning (at rest 130) and standing 160's... Also with this I get severe head pain when I feel my sensations.. it's all complicated! And apparently this can effect the Parasympathetic Nervous Systen as well as the Sympathetic Nervous System. Also wouldn't it effect Metabolism and that is why I am losing weight and can't feel effects of meds because maybe my body is metabolizing them rapidly? My internal Med Dr also wants me to get a Holter Monitor. So I will go today to have that done and will return it tomorrow afternoon. So maybe there are some answers? I just want to feel better... I am sorry for using this forum in this way, but I was wondering what your thoughts are on this? Thank you, Stephanie |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by richie on Jan 27th, 2012, 2:27am i´m no doctor, but during my episodes of feeling very bad some doc mentioned this pheochromocytome to me too. Its worth looking at i quess. I never had the severe headache and the very high bloodpressure so i never had this examined, cause these are important symptoms they told me back then. Its correct that this pheochromocytome can produce symptoms that very much look like heavy anxiety and panic symptoms I know that I was afraid for some days a year ago when this doc told me (a friend of a friend who was off duty who saw me there having an attack of shivering trembling, sweating and so on during a party) that I had this. cause this guy worked as an ER doc so he wasnt an amateur. I didnt have it tested cause like I said I hadnt high blood pressure and severe head aches. But in your case , having such severe symptoms why not have this checked out? good luck |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by mbajd on Jan 27th, 2012, 5:59am Steff - I've been tested for pheochromocytoma. I was having many of the same symptoms you describe like high HR in the mornings, high HR with little effort, etc. I NEVER had the high blood pressure as my BP tends to be low, but I got the full test for pheo anyway (back in 2004) including having to catch my urine and take it to the hospital for testing, blood tests, etc. Turns out I did not have it but it helped reassure me to get tested anyway. I understand that high BP is a hallmark of this problem so maybe it's a good idea, if nothing else for your peace of mind. Plus, if they did find a pheo, I think they can operate and may be able to resolve all your problems - that would be a good thing. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Jan 29th, 2012, 12:24pm Thanks for your input... I just want to know what is going on... One thing for sure is I know my body metabolizes meds way too fast. For instance, I will take 1 mg of Xanax in the am, 1 mg at 12 pm, 1 mg at 4 pm and 2 mg at bedtime plus 30 mg of restoril and I still do not feel tired.... It's like my body is rapidly metabolizing any meds. I get the same effect when I use to drink alcohol... Like I never drank anything and I am usually not a medicine taker until the insomnia started over 2 years ago... This has me very concerned. RLR any thoughts on this?? I wish I knew what was going on in my body. Again my psychiatrist has given me meds, for certain it would me me sleep and or feel effects and again NOTHING... How can I not be worried? |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Jan 29th, 2012, 2:06pm Will be seeing my Internal Med Dr about being tested for Pheochromotocytoma. I just do not understand what is going on and after seeing my Psychiatrist and her talking to my Internal Med dr after trying various medicines in the hopes that it would alleviate any psychiatric illlness, she is thinking more physical in nature... And I know we have exhausted the fatal insomnia stuff. but I still wonder if it has something to do with that and maybe my last attack never fully went away but was maintained due to the Benzoziazapines I am taking... I just don't know... I SO want to be normal. I still have rapid heart beat at rest and I do not feel anxious. I take anti-anxiety meds and it doesn't have any effect on me (tired wise)... My Bp spikes and my face gets beet red still at times. I still get get the hyperreflexia at times too... Muscle twitching (all of which I have explained numerous times)... Mostly the same symptoms... I really appreciate your help.. I just want HELP and I want to be around a LONG time for my children.... I truly feel like this is something rare.. You have to believe me on this! I know I am anxious (inwardly) but I know this is not normal... I pray everyday that God will answer my Prayers and I know He is listening... Thanks RLR.. Stephanie |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Jan 30th, 2012, 12:11pm Update: Saw my Internal Med dr and he wants me to do a 24 hr urine collection (which I am doing) to test for Pheocrhromocytoma (don't know if I spelled that right) and also is checking for Carcinoid Syndrome (through urine called 5HIAA) and also something (again through urine) called Serotonin Syndrome (even though I don't take anything with serotonin in it. Go in today for CT Scan of my lower and upper abdomen. Had a CT Scan in August when i was Dx with Mono and it didn't show anything with the adrenal glands. Just small cysts on my apparent right pelvic kidney... I am just very confused with all my symptoms, not feeling effects of medications even at high does, etc.. Burning, hyperreflexes, and on and on. You already know my symptoms. The Urine collection will be sent to Mayo Clinic. I just am scared and hope I will be OK... I just feel like whatever this is.. it is rare.. Please do respond... Do you think I will be OK, RLR? Thanks for your advice... |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Jan 31st, 2012, 7:42am Update: The CT Scan of my upper abdomen didn't show any abnormalities in my Adrenal Glands.. Still doing the 24 hr urine collection (which I turn in today) to check for the above mentioned... So tired of going through all this... RLR can you shed any light on any of the above... And is there any people who metabolize meds at a fast rate and do not feel effects? I take high doses of meds to sleep and might sleep for 3 hours and then am wide awake. Currently 2mg of Xanax and 30 mg of Temazapam and still wake up at 2:45 after going to bed at 11pm or later.. No other meds have any effect on me.. No effects. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by SK on Jan 31st, 2012, 7:37pm Hello Steff, Have you tried to go with a Psychologist instead of a Psychiatrist? Why don't you give it a try? It is just a thought. Best of lucks, SK |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 1st, 2012, 11:50am I have seem Psychologists before... I might do it again.. I just want to feel better. What bothers me the most is the sleep problems and waking up at 2:30 am regardless of the 2mg of Xanax and 30 Mg of Restoril (temazapam).. This all started 2 years ago with the sudden sleep insomnia and then alll these other symptoms came back... I just hope I will be ok.. It's hard to understand unless you go through it and its complete hell. Noone should have to go through this and its hard because the Physicians are at lost... And its not all in my head! I have done everything the Dr's told me to do, testing, taking meds which don't help much at all, etc... I keep a journal, talk positive to myself.... I feel like this is soemthing rare. Fatal insomnia? Even though RLR you said definitely not that, what if the benzos have been keeping it at Bay and now its getting worse?? I just don't understand... I want to not worry and get on with it just like everyone else..... But this isn't right........ |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 3rd, 2012, 2:38pm Then I get to thinking (as my last Neuro thought 2 years ago) that maybe all this has to do with my Temporal Lobe Epilespy? (again was comfirmed by EEG and the neuro said there were sharp patters on the EEG 2 years ago). I have lesions bilaterally on both Temporal Lobes. Maybe the neuro pathways are misfiring a lot hence why I can't sleep, can't feel certain effects, etc... That is what my last Neuro thought... I take Keppra for the seizures and have been for the past 1 1/2 yrs (as the Lyrica I could no longer afford)... I don't realize I am having seizures, but I wonder if that could explain why I feel certain things and don't feel certain things? I know and have always thought whatever this is effects the autonomic nervous system. I have seen my Psychiatrist and she does not think this is depresson or anything like that. she thinks its physical in nature (besides being anxious about this). I wouldn't be normal if wasn't worried about it.... Ugh. I just want to feel better.......... what are your thoughts on all this RLR? |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Andrea on Feb 3rd, 2012, 6:27pm Long term regular use of benzodiazepines will eventually lead to tolerance - meaning your body won't feel the effects anymore. Talk to your doctor about that and see what he/she thinks. I would definitely get back to seeing a psychologist or a therapist rather than a psychiatrist who really only will tinker with your meds and not work on the deeper issues. If anything, they can teach you some ways to cope with the stress and anxiety of your potential illnesses. If you can learn how to cope, you may start feeling better... anxiety makes just about everything feel worse. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 4th, 2012, 7:32am Thanks for your input. I did talk to my Psychiatrist about the effects of the Alprazalom wearing off and she said since I didnt have an addictive personality (which I never have) then she said I needed to take it to keep my anxiety at bay for the time being. I have tried other medications like Ambien, etc to sleep and nothing else helps. The Benzo like Restoril (30 mg) and Alprazolam (which I take 5 mg total a day) do not help at all. I do not feel the effects. I think it may help with the anxiety part and I think it does help me sleep. But with the 2 meds combined I still only sleep at best 4 hrs a night, when the average person would sleep a whole lot longer.... And even before meds, I still had these attacks (minus the Insomnia which started 2 years ago) and again the only thing that remotely helps is in the Benzo class and it doesn't work for long. I have tried other meds like Seroquel, antidepressants, atypical antipyschotics and again they have absolultely no effect on my body. The thing my Neuro said a couple years ago was that he thought the Temporal Lobe Seizures were causing my brain to misfire with sharp waves (whatever this means) and it would take time for my brain to stabilize. I am on Keppra 750 mg 3 times a day and still I go through this. I do have a feeling some of it is caused my the Temporal Lobes, mostly effecting the Autonomic NS type seizures. And from what I have heard Temporal Lobe Epilespy can be difficult to treat (which meds work, etc).... I have seen counselors before, so I do know all the skills and am using them... I can't afford at this point to keep going to the Dr. My Psych mentioned going back to the mayo Clinic, but again we cannot afford it. I am doing everything I can........ Thanks for your help... |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 10th, 2012, 5:18pm still continuing to go through this... It is awful dealing with this.. I wish I understood, wish I had an answer. I take the sleep medicine and STILL can't sleep but a couple hours? I take 30 mg Restoril 30 minutes before bedtime as well as 2mg of xanax and still I don't sleep but maybe 3 hrs? This has been going on for 26 months now. I know Sporadic Fatal Insomnia is RARE, but I have heard of some living up to 36 months. I follow good sleep hygiene, give myself plenty of time to relax in the evenings, have been wearing earplugs for over 2 years now to drown out any sounds... Still I go through this and I am worried. Dr's can't figure out what is wrong. I have seen counselors, psychiatrist, neurologist and they are puzzled. Keep saying its the "Temporal Lobe Eplilespy" which I take 750 mg of Keppra 3 times a day for. My reflexes are jumpy, I feel like I have a hard time remembering certain things, I have tried many medications for anxiety, depression, etc and it has no effect on my brain. I feel no different and I have no side effects of drowsiness when I did take them in the past. Now this has been going on for a long time.... I know I am worried, who wouldn't be? Something is wrong and I know it..... I pray everyday I get better for the sake of my children and husband and myself. I know everyone says Sporadic Fatal Insomnia is rare, but why suddenly over 2 yrs ago would I not be able to sleep? No known reason it just happened. Previous to that I had problems falling asleep and it would take over an hr and then it just got worse and worse. I am still losing weight even though I am eating. I wake up at 2:00 am (after taking sleep meds) and then I lay there or get up and use the bathroom and can't sleep anymore. I then get up and everyday my heart pounds, I sweat a lot, my pulse is always high, etc. Sounds like anxiety but I take anxiety medication... I take 1 mg at 8 am, 1 mg at 12pm, 1 mg at 4 pm and 1 mg at 9:30 pm along with the Temazapam 30mg as per my Psychiatrist and STILL I can't sleep that much? I feel whatever this is, is getting worse. I certainly don't want to have a rare disease of any sort. I just Pray I get better.... Thanks RLR.. Please Pray for me.. And for all others who will say this is anxiety, etc please do not. This has been hell to go through. I am doing everything I can to get better. I do not like this at all and just keep praying and having faith I will get better. Thanks. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Chris on Feb 11th, 2012, 7:57am You have severe health anxiety and panic disorder. All your symptoms point to that. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Andrea on Feb 11th, 2012, 9:36am I'd be willing to bet that it isn't fatal insomnia. Wouldn't you be exhibiting a lot more symptoms than just insomnia at this point? The train is coming off the tracks. Step back, take a deep breath, and try to be logical. You NEED to find a way to cope with all of the stress you're going through because it's only making your symptoms worse. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by richie on Feb 12th, 2012, 11:38pm I dont know what it is. So I cant say like others - its severe anxiety- . I know anxiety can do0 a lot of strange things, but not everything is ONLY anxiety. You can get anxious of bodily symptoms that are so severe , and doctors dont know whats going on, that you become anxious. But what was there sooner? I hope you get your answers . Cause thats the only thing what can get you started coping with this |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 13th, 2012, 5:39am I am anxious about whatever is going on. I know there is something wrong and this isn't health anxiety. It is only getting worse. I took 30 mg of the Temazapam along with the 2 mg of xanax and woke up at 11:45 pm after going to bed at 10:45. Then I just tosses and turned all night. This medicine should make me sleep! I am at lost and I am scared. RLR, do you think this could be anything bad? I keep asking, but I know something isn't right... Still losing weight. Alll my bloodwork has been normal... |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by mbajd on Feb 13th, 2012, 7:04am Steff - how did your pheo test come out? Could it be that you have reached tolerance to Xanax so that it doesn't work anymore? I'd ask my psychiatrist about switching to something else and even trying a stronger sleep aid. Temazepam is a benzo like Xanax so maybe the tolerance could affect that, too? Of course, I"m not a doctor. If you REALLY think you have this fatal insomnia (which I looked up briefly and it appears only 8 cases have ever been diagnosed) then find a neurologist who will humor you and ask for the testing. I honestly think you probably have some kind of somatization disorder (which I was diagnosed with in connection with my heart palpitations) but if you have good insurance, talk to a neurologist. Also, how old are you? This disease doesn't set in until after 40 so if you're younger than that it adds to the likelihood that isn't your problem. Again, I definitely don't think you have it and I've had severe anxiety but I know that reassuring testing has helped me in the past. I'd trust your doctor, of course, though. |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 13th, 2012, 7:18am I am 34 years old. The Sleep issues started 26 months ago to where I had to take somethng to sleep. I was awake for 5 days straight and it was sudden. I knew something was wrong. Then after numerous sleep aids, anti-depressants, etc (thinking maybe I was crazy) the only medications that worked were in the Benzo Class. I have had Dr's say "This will make you sleepy" when trying other meds and it has no effect on me. I feel like whatever this is.. it's only getting worse. I have seen counselors, psychiatrist, Neurologists, Internal Med Dr, etc... Everyone seems puzzled. I do not want to have fatal insomnia. There are 25 known Families and then there is a Sporadic Kind that is not Genetic. I really don't know if I want to know if I have this... I keep thinking positive, do everything the Dr's tell me to, etc.... I don't feel a sense of fear, hunger, sensations hardly at all, I am losing weight even though I eat... I do not feel tired which is weird. I was tested for Pheochromocytoma and Carcinoid Syndrome and both came back fine.... RLR could you please shed some light? I was told 2 years ago all this was caused probably by Temporal Lobe Seizures, but again I take Keppra 3 times a day for that. I don't even realize I am having seizures. Then I was told MS, but again my MRI appears to be stable. So the insomnia continues........... I don't want to die from some rare fatal disease and I know everyone reading this thinks I am nuts, but I promise you I am not nuts. even my Psych says I am not and I have been seeing her for 6 yrs now.... |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Steff1573 on Feb 13th, 2012, 7:24am And here is a link on a 32 year old woman who had it. She lived over 2 years. They thought she has depression, panic disorder, etc.... And what is interesting is that her EEG said she had sharp waves on her EEG suggesting seizures, which is what my Neuro (seizure dr) said I had on mine... http://www.biomedcentral.com/1471-2377/11/136 |
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Title: Re: RLR - Regarding my Physician and Dr's thoughts. Post by Chris on Feb 13th, 2012, 10:14am But Steff you're picking out one person out of a world population of 7 billion. Think about that number. 1 in 7 billion. RLR has already explained in previous posts that FFI has affected just 100 people worldwide and if you had it, you'd certainly be unable to type coherently on the forum. The thing is, what you're asking from RLR and the forum is impossible. We try to reassure you but you insist something is wrong. So what can we do? I'm really really sorry that you're going through such a tough time, but you've been around on this forum and others for a long while, don't you think it's time you stopped searching for the vaguest and most incredibly improbable diseases and actually look into the anxiety situation? You don't have to accept that it's anxiety and that's it, but I get the impression you are keen to dismiss it as impossible, and if you'd pursued anxiety like you pursue these billion to one diseases you may be feeling a lot better now. As I said Steff, I don't mean for this to sound harsh and I am sorry you're going through such a tough time, but the way I see it there is nothing anyone here can do to help you. I personally believe you are suffering from chronic anxiety, which causes numerous symptoms all of which you've described at one point or another on here. If you feel otherwise, you need to consult your doctors who are there with you, face to face. If they do the tests and nothing is wrong, then you really need to look at yourself and accept that actually, maybe nothing is wrong. You're underestimating the power of your mind Steff. I wish you well. |
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