Hi I am interested in any feed back re high blood pressure. While I am aware that blood pressure drops during an attack (which mine does) do other people suffer from high blood pressure while attack free? If so are you being medicated? I am having trouble with mine being high again and I am really apprehensive about taking medication as there is a pattern of high low normal...in short all over the show. At present I am 180/100. Any suggestions? Ruth Nolan

Ruth, I was diagnosed with high bp several years before my first attack, and began taking bp meds to control it.(it must have been genetic because at that time i only weighed about 118lbs.) (And i was diagnosed with MGUS about two years before the SCLS.) I am presently on Benicar for my bp. I was on a different one before the first episode, but after my second episode and SCLS diagnosis they changed me to the Benicar. I also use it along with hydrochlorothazide. My effexor(for depression) also increases the bp. After an episode, it is two to three weeks before i resume the Benicar, checking my bp thru out the day. If my bp is high i struggle with severe headaches. During my second attack, they did several cts, one of my heart which showed left ventricular hypertrophy(Arturo and Dr.Greipp feel free to correct my medical lingo), which is a thickening of the heart that develops with long term uncontrolled high bp. After changing to benicar, (getting my bp closer to 120/80 or 110/70 rather than in the 130s), my most recent ct of my heart showed the heart had healed and was back to a normal size. When my doctor told me this good news, i replied, "Praise God!",( I'm sure he thought, "and benicar, too.") I am not a doctor, but i think 180/100 is definitely not safe, more than likely considered "severe hypertension". Your physician should be able to find a bp med that is right for you. It may take several tries before you find what's best. Some cause side effects like sleepiness, fatigue, headaches, etc... I know because initially i went thru about three different ones before finding one that made me feel normal. sincerely, marilyn

Based on my own experience, I think SCLS and heart issues go hand in hand. Prior to my first major attack in '07 I had no heart issues; then I was diagnosed with borderline HP of 140's over 80's. After my second SCLS episode in early '09 which included a 30 day hospital stay I had tachycardia (rapid heart rate of over 230 beats a minute!) on one occasion which prompted a heart cath examin Nov '09. It discovered an 80% blockage of the left main artery (the one that provides the heart with 80% of its blood supply). Because of my history of SCLS, they decided not to do a bypass and did a stent instead. They said it was unusual to have that amount of blockage in one artery while the rest of my heart looked perfectly normal. (My cardiologist also said they couldn't wait to get me out of their hospital before I had another SCLS episode!) I couldn't tolerate the statins for cholesterol and the high blood pressure meds but with a 20lb weight loss and niacin/welchol daily, my blood pressure and cholesterol counts are normal now. Except when I have a minor attack of SCLS which caused my BP to drop to the 90 over 50 level. By the way, I'm 67 years old so consider myself lucky. Hope this helps. My search through the profiles of others on this site has also turned up heart issues in some others. I, too would be interested in Dr. Grippe's thoughts. One final note; the NIH research study did a MRI of my heart and though I don't have the results back yet I think it is of interest that they are looking at that angle as well.

Thanks for your feed back.. Today I am back down to 134/80... My blood pressure is all over the place. I am sure blood pressure has something to do with ISCLS? Any other feed back would be greatly appreciated as I am very much alone down under and medical staff while they are caring and sympathetic I feel I need to be informed as they use the rarity of SCLS as an out for finding a solution? Cheers Ruth Nolan NZ

Hi Ruth, Before CLS 120/80 all my life. I had high blodd pressure since my first incident and while on aminopyhilline. 160/100 to 90/60 was not unusual. 130 beats was common as well. Now after IVIG and off all meds, my blood pressure still peaks and droops. The range is much tighter. 140/90 to 120/75. This does not happen often. My beats are steady at mid 60's. Each time they check my heart, they rank it as a 40 year old equal. I'm 54 so I have something going for me. Walt Breidigan

Hi Ruth Brenda has high blood preassure and yes it drops when she gets the attacks. . jessica

Hello Marilyn and Ruth, while I am reading your comments I feel like you are talking about me!!! It is so amazing how we are all alike and yet a litttle different? I as well suffer from blood pressure issues, comes and goes with the high. Just the other night I woke up with a terrible head-ache!!! I checked my pressure and it was 200/110!! I took a blood pressure pill to get it down. Get this, I went from 200/110 at 4am to 101/62 at 9pm, crazy just like dealing with SCLS. I know things must being trying to manifest, and then it stops. You would think that the low pressure and is the problem, we have to watch the high as well. Since it is not a regular problem, we cannot medicate daily because I drop way to low, you do not know what a comfort it is to hear your comments. Sometimes you think you are crazy!! I too have heart issue. Was diagnosed at Mayo In Dec. 2004, and in my visit there in 2006 they heard something in heart and when I returned home I saw cardiologist and he said I have leaky mitro valve. He is watching it. Now I moniter my pressure as well every day. Would you mind if we shared E-mail addresses? Yes. Ruth you need to do daily moniter of BP, I have to as well and when mine is running high I medicate, it is not good to have pressures stay so high, couldn't that lead to stroke? I know it is hard, hope and pray someday we will all have more answers, it is a daily battle. God Bless Mary Jane

I am 57 years old and have been on Toprol XL for hypertension. However, I did not relate it to SCLS sincemy entire family has suffered from hypertension and PAD. My mother passed at age 69, my dad at 73, my sister at 45, all of "heart attacks." I also have two brothers, one had his first cardiac episode at 45 years old resulting in a triple by-pass. My other brother had his first cardiac episode during stress testing and had a stent inserted, he was 50 years old at the time. I have always thought my hypertension was due to genetics and the fact that since my diagnosis I have gained 50-60 lbs that I have not been able to get off!!!

Ruth in Christchurch, New Zealand, I would like to swap email addresses if you would too. I am not quite sure how to go about it.

Windows My email is mikeandruth@clear.net.nz Ruth

Hi Ruth In case you are tracking, I have had high blood pressure for tbe past 23 years or so. I also have tachychardia. I have tried dozens of different bp meds. I currently take bystolic (beta blocker) and spironlactone but am being weaned off bystolic due to irregular heart beats and joint pain. My nephrologist/ hypertension specialist will not prescribe lisiniprol (which is the med that Sarah, aka windows, just commenced) despite Dr.Greipp's recommendation to help with scls symptoms because she said my labs all demonstrate I have LOW RENIN hypertension and that I should therefore not take that ace inhibitor or else could result in angioedema. Im not sure what the next bp med is going to be... she continues to increase the spirnolactone in an attempt to eliminate the fluids that continue to collect 24/7. I believe my high bp is genetic as my parents and all of my siblings suffer from high bp and all take hypertensive medications.

Thank you so so much susanfv. I have just seen my hematologist and he is referring me to a heart specialist and appears like yours he is taking a careful approach. My bp goes all over the place so I am happy for him to be conservative in his approach. I have also just had a CT scan of my abdomen and chest awaiting those results. As you can imagine it is about trying to work out what is happening along side the SCLS... or what is connected?? Many more questions than answers... thank goodness for this site and all the wonderful contributions people make. Take good care Ruth (Christchurch NZ) :-)

The Lisiniprol may take a while to get used to. I feel as though I am about to get a cold all the time- sore throat and constant coughing. I will still wait out the three week trial. Just thought it may be a common side effect but don't know anyone else who has taken it.

Sarah, I asked my Nephrologist/Hypertension Specialist, Dr. Steigerwalt again about Lisiniprol. 2 days ago she put me on it (along side the sprinolactone and other meds) and she is monitoring me very closely. I will have labs in a few days. She does not think it will be effective but is willing to try anything at this point and this was Dr. Greipp's rec. I am experiencing the same symptoms as you. I am being admitted today into Hospital for monitoring to repeat abnormal tests, This disease really is strange. Be well. Susan

What abnormal tests are are you having repeated, Susan? Why does she feel it will not help? This disease is very baffling indeed. Take care. These symptoms must be a common side effect. Not terrible but not nice either!