Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Hello friends, I have not posted in some time as I am in a big crash and not feeling at all well. I have been reading the email however and feel as though I am caught up on everyone's condition! Wanted some feedback with regard to my current situation.... To recap, I have lost a significant amount of weight, have horrible night sweats, uncontrollable blood pressure, rapid pulse, neuropathy, uncontrollable migraines and increasing mental confusion. In addition, my urine output ("volume") has decreased by half, but I am getting up in the night to go. First saw neurologist approx. 1 month ago. Started on Verapamil (brand name Calan....a calcium channel blocker) 120 mg. a day and 1 Neurontin at night. Blood pressure and migraines continue and are completely debilitating. Last Thursday, while I was driving with the kids in the car (of course!) I was having a migraine then abruptly had a sharp, stabbing pain in my right eye. This lasted perhaps a minute and a half. After that...I became completely disoriented (by this time I made it home...don't worry!) and could not speak. I knew I wanted to speak, but it was virtually impossible to get the words out! Felt like I had a mouthful of cement... My eye muscles actually were "strained" and hurt for a few days! Stupidly I went to bed and about 45 minutes later I was fine. I also didn't call the doctor until this past Monday and told him about my little episode. I don't think he was pleased with me. Anyway....I am now taking 3 120 mg. tablets of Verapamil and 3 Neurontin a day. My blood pressure cannot get lower than 138/87 and my pulse is running around 90-100! (My normal bp before all of this was 100/60...my cholesterol is perfect) The neurologist is out of town until Saturday, but he has told the staff at the hospital that if I call with symptoms like last Thursday to reel me in and take a look at me. I have an appt. with the him on Tuesday and I am scheduled for an EMG next Friday. I have begged, pleaded and whined to nephrology to squeeze me in early...but that appt. is still 8/12. Anyway....that's why I haven't posted....I read emails for a little while then my eyes bother me. I can't believe how much I have deteriorated in such a short time! Additionally, the neuro ordered tests for a type of vasculitis, which I had done on Monday. If anyone has any words of wisdom or has experienced anything like what I did last Thursday, I would love to hear from you. I feel very spaced out and "stupid"...I can barely remember my kids' names! Dr. Ken...if you read this...I just wanted to mention that I ran through your posts on hemachromatosis...in my current mental state I can't remember all the details. However, for what it's worth....my Dad has it and my oldest brother has it as well. I was told not to worry about it until I stop having my period..... Thanks for listening/reading! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Carol, I'm glad you posted to the list but I'm very sorry that you are so ill. It does sound to me as if you need to go straight to the hospital if you have any resumption of the symptoms you described. The sharp pain in your eye followed by the inability to speak sounds very much like an SLE (Stroke Like Event) which is a common problem with Mito. I'm glad things came back to normal after the rest. It sounds like your kidneys are acting up too. Are you on any dieuretics? If not..it may be time to get on them. You might press the fleshy part of your leg above your ankles to see if it stays indented. If so..you are probably retaining fluids which could also make your blood pressure rise. Dieuretics also tend to bring down the blood pressure - but I have to say that your blood pressure isn't terribly high...just probably high for you. I would be happy with that reading. Another thing that needs to be checked is your fasting blood sugar..or at least I think so. This would be just to make sure that you are not developing diabetes. I sure hope you don't have any more of those symptoms, but if you do, please don't hesitate to call your medical professionals and get immediate help. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Dear Alice: Thanks so much for responding... I agree that my bp isn't horrendous...however, according to my pharmacist (and based on my 5', 105 lb frame) the amount of BP meds I am on should put me REALLY LOW!!! As far as water retention, I only notice it first thing in the morning. My eyes look swollen shut and my fingers are extreemely puffy. Never have problems with ankles or feet. Carol Re: Update.... Carol,I'm glad you posted to the list but I'm very sorry that you are so ill. It does sound to me as if you need to go straight to the hospital if you have any resumption of the symptoms you described. The sharp pain in your eye followed by the inability to speak sounds very much like an SLE (Stroke Like Event) which is a common problem with Mito. I'm glad things came back to normal after the rest.It sounds like your kidneys are acting up too. Are you on any dieuretics? If not..it may be time to get on them. You might press the fleshy part of your leg above your ankles to see if it stays indented. If so..you are probably retaining fluids which could also make your blood pressure rise. Dieuretics also tend to bring down the blood pressure - but I have to say that your blood pressure isn't terribly high...just probably high for you. I would be happy with that reading.Another thing that needs to be checked is your fasting blood sugar..or at least I think so. This would be just to make sure that you are not developing diabetes. I sure hope you don't have any more of those symptoms, but if you do, please don't hesitate to call your medical professionals and get immediate help.AliceMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 In a message dated Wed, 24 Jul 2002 7:45:39 PM Eastern Standard Time, cbach@... writes: > As far as water retention, I only notice it first thing in the morning. My eyes look swollen shut and my fingers are > extreemely puffy. Never have problems with ankles or feet. Carol, This is still water retention. Have you told the doctor you wake up this way? You may need a dieuretic but if they put you one one, watch out for hearing loss. It can happen very quickly with a dieuretic, especially Lasix. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Carol No words of wisdom, but lots of hugs. laurie Reply-To: Date: Wed, 24 Jul 2002 20:31:00 -0400 To: Subject: Update.... Hello friends, I have not posted in some time as I am in a big crash and not feeling at all well. I have been reading the email however and feel as though I am caught up on everyone's condition! Wanted some feedback with regard to my current situation.... To recap, I have lost a significant amount of weight, have horrible night sweats, uncontrollable blood pressure, rapid pulse, neuropathy, uncontrollable migraines and increasing mental confusion. In addition, my urine output ( " volume " ) has decreased by half, but I am getting up in the night to go. First saw neurologist approx. 1 month ago. Started on Verapamil (brand name Calan....a calcium channel blocker) 120 mg. a day and 1 Neurontin at night. Blood pressure and migraines continue and are completely debilitating. Last Thursday, while I was driving with the kids in the car (of course!) I was having a migraine then abruptly had a sharp, stabbing pain in my right eye. This lasted perhaps a minute and a half. After that...I became completely disoriented (by this time I made it home...don't worry!) and could not speak. I knew I wanted to speak, but it was virtually impossible to get the words out! Felt like I had a mouthful of cement... My eye muscles actually were " strained " and hurt for a few days! Stupidly I went to bed and about 45 minutes later I was fine. I also didn't call the doctor until this past Monday and told him about my little episode. I don't think he was pleased with me. Anyway....I am now taking 3 120 mg. tablets of Verapamil and 3 Neurontin a day. My blood pressure cannot get lower than 138/87 and my pulse is running around 90-100! (My normal bp before all of this was 100/60...my cholesterol is perfect) The neurologist is out of town until Saturday, but he has told the staff at the hospital that if I call with symptoms like last Thursday to reel me in and take a look at me. I have an appt. with the him on Tuesday and I am scheduled for an EMG next Friday. I have begged, pleaded and whined to nephrology to squeeze me in early...but that appt. is still 8/12. Anyway....that's why I haven't posted....I read emails for a little while then my eyes bother me. I can't believe how much I have deteriorated in such a short time! Additionally, the neuro ordered tests for a type of vasculitis, which I had done on Monday. If anyone has any words of wisdom or has experienced anything like what I did last Thursday, I would love to hear from you. I feel very spaced out and " stupid " ...I can barely remember my kids' names! Dr. Ken...if you read this...I just wanted to mention that I ran through your posts on hemachromatosis...in my current mental state I can't remember all the details. However, for what it's worth....my Dad has it and my oldest brother has it as well. I was told not to worry about it until I stop having my period..... Thanks for listening/reading! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Alice and Carol I had taken a beta blocker and calcium channel blocker for years and had swelling all the time in spite of a dieuetic. My nephologist took me off the calcium channel blocker as it causes water retention, along with the water pill. He put me on an ace inhibitor and almost all the water retention is gone. Only the top of my left foot gets swollen and this is the area that has always been worse. laurie > > Reply-To: > Date: Thu, 25 Jul 2002 00:42:04 -0000 > To: > Subject: Re: Update.... > > Carol, > > I'm glad you posted to the list but I'm very sorry that you are so > ill. It does sound to me as if you need to go straight to the > hospital if you have any resumption of the symptoms you described. > The sharp pain in your eye followed by the inability to speak sounds > very much like an SLE (Stroke Like Event) which is a common problem > with Mito. I'm glad things came back to normal after the rest. > > It sounds like your kidneys are acting up too. Are you on any > dieuretics? If not..it may be time to get on them. You might press > the fleshy part of your leg above your ankles to see if it stays > indented. If so..you are probably retaining fluids which could also > make your blood pressure rise. Dieuretics also tend to bring down > the blood pressure - but I have to say that your blood pressure isn't > terribly high...just probably high for you. I would be happy with > that reading. > > Another thing that needs to be checked is your fasting blood > sugar..or at least I think so. This would be just to make sure that > you are not developing diabetes. > > I sure hope you don't have any more of those symptoms, but if you do, > please don't hesitate to call your medical professionals and get > immediate help. > > Alice > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Alice: Thank you for your response.....I will keep the info on Lasix in the back of my mind (these days I am having trouble with retrieving everything back there!) I'm on the calcium channel blocker Verapamil/Calan to help with the migraines and hopefully bring down the BP. It hasn't done either, but I can imagine how high my BP would be if I weren't on meds. Like I mentioned before, 138/87 ish doesn't sound too bad to many people, but in January I was (and always had been) 100/60. The worst it every got was around 160/102 with a pulse of 120. I will mention the a.m. water retention next week when I see him. Are there any diuretics that don't affect hearing? Carol Re: Re: Update.... > As far as water retention, I only notice it first thing in the morning. My eyes look swollen shut and my fingers are > extreemely puffy. Never have problems with ankles or feet.Carol,This is still water retention. Have you told the doctor you wake up this way? You may need a dieuretic but if they put you one one, watch out for hearing loss. It can happen very quickly with a dieuretic, especially Lasix.AliceMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Alice is right!!!!!! oyou have two go very slow with lasix -- i take 160mg IV push two time a day thru me central line and i have need of build up two that dose very slowly and i cannnot!!!!! with any circumstandce push it any more fast than over 15 minute so it is like push about 3cc every 4-5 minute it take a while. if you take it oral whic is what i start with year and year ago -- they increase dose a lot of slow by watch you blood level and daily weigh in the morning you weight and the night that is when all you fluid gone it call you " dry weigh " or " you true weigh " ---- another thing, swell of the face especially around the eye, abdomen, arms etc is relate two kidney issue and i no because i am with kidney failure -- i am NOT NOT saying you is with kidney failure but you should bring it two you doctor attention. as a general rule when the leg and ankle is swollen the very first thing that is think of and rule out is the heart because that CLASSIC symptom of Congestive Heart FAilure of some kind but you say you legs and ankles is fine i believe and that why me explain this. hope it help you. check with you doc thoug, don't panic and DON'T SUFFER!!!!!!!! water retention present a HUGE SLEW OF PROBLEM FOR REST OF SYSTEM WITH BODY! please take of a doc and don't wait two long -- OK? i think of you. E........ Quote Link to comment Share on other sites More sharing options...
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