If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Desperate Down Under

Collapse

About the Author

Collapse

progers Find out more about progers
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • BJ
    replied
    Re: Desperate Down Under

    Dear Paul,

    Hi from over the ditch.

    I had my first attack of light headiness after my 4th cup of coffee for the day. Caffiene is not a good thing in any form as it seems to kick off arythmias for me, which can cause neck discomfort and light headiness.

    I share your problems with finding cardiologists with experience in HCM, but have just returned from a follow up consultation this morning and very fortunately struck a cardiologists who worked with a researcher on the topic in UK it was great to discuss at length the situation with her.

    I am just beginng on this path and have been quite confused getting my head around the condition and the many aspects of it. My complication was a neck injury that damaged some cervical disks and this all started after some irritation to this injury causing neck pain, an MRI and discussions later showed that this is likely to be just coincidence. The neck discomfort is more likely due to my HCM.

    Hang in there.

    This is a great site (well done Lisa and others) and certainly helps shed some knowledge on an as yet little known about condition.

    Leave a comment:


  • Burton Borrok
    replied
    Re: Desperate Down Under

    Hi,
    I’m on a diuretic and my doctor is also concerned about my keeping hydrated. If I drink plain water however, for some reason I feel uncomfortably bloated. I’m also a diabetic so sweet sodas aren’t the answer either.

    When I’m out at a restaurant I order unsweetened Iced Tea which I can tolerate well, and at home I drink club soda, which I have grown to love. It’s just water and carbon dioxide, plus a little salt to give it a bite. The salt is not the greatest thing, but making your own club soda with a siphon and CO2 cartridges is such a pain. If you want to try some club soda yourself, please let me know how you make out.
    Burt

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Hi Shirley,

    That's interesing about diastolic BPs and dehydration. I hadn't heard that before but it makes sense. I am a big water drinker: I never drink sprite, cokes or other sweet soft drinks because they make me SO sick. In fact, I can feel fine, go surfing for 3 hours, but if I have a coke, I get serious chest pain and/or an increased pressure gradient. Weird huh? I wonder if anyone else has this problem?

    I've also been feeling a little better over the last few days. The dizziness and confusion are not as bad and I'm at least thinking more clearly. Got to ge ready to teach next semester at University!

    Best,

    Paul

    Leave a comment:


  • shirleymahoney
    replied
    Re: Desperate Down Under

    Paul

    Do you take a diuretic, if so my doctor told me that a low diastolic was a good sign you are becoming dehydrated, well i was nervous about taking my diuretic and didn't want to increase it without my doctor seeing me, well he increased me to 60mg a day or 80 mg as needed, lets just say i've lost 7 lbs in 36 hours, and he just said watch your diastolic pressure if it drops start drinking water until the diastolic comes back up and if it doesn't call me, hope this might help, i know my husband doesn't like to drink water are you a water drinker, i don't know your situation but i thought i would just throw that in. hope you are feeling better take care

    Shirley

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Hi Mansour,

    That's great news! What was your gradient before surgery? You obviously had SAM right? Was your obstruction at the top of the septum, or did it stretch down to the bottom? My septum is thickest at the top, but also is thick down towards the bottom of the LV by the papillary muscles, which makes surgery and its outcomes more complicated. I know I will do a myectomy if given the chance. At 34 I wouldn't want to risk my health for the future. I can live with the scar but not without my heart!! I've read that many of those who undergo myectomy at an experienced center go on to live an "completely normal lifestyle". Having said that, I am currently in Australia and may not have the option of doing a myectomy. So, it may be an ablation after all!

    Best wishes,

    Paul

    Leave a comment:


  • behrang
    replied
    Re: Desperate Down Under

    Paul, I choose myectomy with no hesitation (thought I am close to 60). I ma doing very very good and nono of the HCM problems are comming back.

    2 points on my posting: none of the Mayo specialists are advocating ablation (it looks part of my posting implied it)

    My son is still student and hopefully he will select to become cardialogist my wife is working on him to be a cosmetic surgeon

    best,

    Mansour

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Mansour, which did you choose: ablation or myectomy? If you've had a precedure, how do you feel now?

    That's very lucky you will have a cardiologist in your family! Good luck to your son.

    Best wishes,

    Paul

    Leave a comment:


  • behrang
    replied
    Re: Desperate Down Under

    Paul,

    I had the same question 7-8 monts ago: ablation or myctomy. In mayo clinic, although they talk about ablation but all HCM specialist and surgeon that I asked thier opinion they prefer the myctomy and encourage the patient to go that route: have been tested succesfuly for 26 years and has the same degree of risk of ablation. Some of them have strong opinion against it. Ther rational is that by injecting alcohol we are actually causing a mnior hreat attcak in that part of the heart, is it realy going to help the patient in the long run. The sometimes you need to add pace-maker or other devices. None of them are needed with myctomy. I believe there are copoules of papers about this issue.

    Just to emphasize on SPECILAISTS as Lisa always does . My son is a medical students he just finisdhed his first round cardialogy training and was very surprized to find-out that he knows more about HCM (by observing my case) than docs in the cardialogy dept.

    Take care of this problem as soon as you can and you will see the difference btween before and after.

    Mansour

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Thanks Reenie. I've done that.

    Best wishes,

    Paul

    Leave a comment:


  • Reenie
    replied
    Re: Desperate Down Under

    Paul, just send Lisa a private message and I'm sure she'll respond.

    Reenie

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Thanks again Burt and Bala. Burt, hope you are feeling good now after that heart cath lab disaster. What went wrong exactly?

    Bala, like you I also just knew that it was a low BP thing and this was confirmed by taking my own BP with a digital monitor over a period of days. As I think I mentioned, my BP got down to around 60/46 at one point and I felt like I was going to die. I'm surprised I didn't pass out, but my BP rose back up to the 100s/50s shortly afterwards.

    I am due to fly to Sydney on the 10th of Feb to the HOCM clinic at the Royal Prince Albert Hospital. It will be costly to go up there but I hope it will be worth it. Meanwhile, I have discovered there is ONE doctor in Australia who does myectomies. He is here in Melbuorne and I thought it would be worth talking to him to see what my other options are.

    I have no idea how to assess the success that they have had, or indeed, if they have even done enough to warant being called an experienced center. I wonder if Lisa has any opinions on this?

    Best wishes,

    Paul

    Leave a comment:


  • Burton Borrok
    replied
    Re: Desperate Down Under

    Paul,
    Sidney is quite a haul from Melbourne, but I think it’s the right move. (Hope you’re planning on flying.) Try to pinpoint the activities that precipitate the dizziness and the headaches (if that can be done.) Keep a log of your BP and pulse readings, and what’s going on at that time, and what you are experiencing. I expect all this information MAY point out to you what if anything precipitates the attacks, and would probably be of help to the doctor you’ll be seeing in Sidney, in making his diagnoses, and planning a future course of action.

    Rhetorical question – Does your wife drive?

    Burt

    Leave a comment:


  • progers
    replied
    Re: Desperate Down Under

    Thanks everyone for the best wishes. I definately think that the beta blockers are having an impact on this BP thing. I take 50 mg of Atenolol. But I've never had these symptoms before and I've been on it for over 2 1/2 years. It is therefore also likely that HOCM is playing a part.

    I tried to explain my BP problems to my new cardiologist on the phone and he dismissed it as a panic attack and told me to go to my GP! HELLO, I've been consistently dizzy for over 3 weeks - that would be one **** of a long panic attack!! He also told my wife and I that headaches are not really a symptom of low blood pressure!!!!

    The problem with HOCM is that very few cardiologists have a full grasp of the many dimensions of the disease. I will be going to Sydney next month to see a guy called Dr. Chris Semsarian, who is one of the best HOCM doctors in Australia. Maybe he will help me sought out this mess.

    Thanks to all you guys for the advice and support, particularly Reenie, Lisa, Linda, Burt, 'Cynaburst' (don't know your name, sorry) and others who might have posted. I will keep you all posted on the latest.

    Best wishes,

    Paul

    Leave a comment:


  • nirvana
    replied
    Re: Desperate Down Under

    Paul, its great that your CT scan came out OK. I thought that was the main concern.

    I also have BP on the lower side (90-100/50-60) and when I had my episode I was convinced that the cause was either low BP or low sugar. There's not really any reason why I should know how low BP or low sugar feels but for some reason I was sure.

    I have mentioned the low BP to my doc because I have felt great (no tightening in the chest or any other symptom) during high BP. But he dismissed it saying high BP should not be risked. Maybe a change in medications or their timing might help.

    Leave a comment:


  • Burton Borrok
    replied
    Re: Desperate Down Under

    Paul,
    During my fourth heart cath last April, complications set in and what is normally a one hour or less procedure ran into six hours over two days. During the second day I developed pneumonia, my kidneys almost failed, and my blood pressure dropped to 70 / 40 - and I'm normally hypertensive.

    It was not a pleasant experience, but they did bring the pressure up with drugs. I think your problem is really a drug problem, and hopefully can be easily resolved. My cardiologist wants to keep my diastolic pressure around 60, and under no circumstances would want to see it around 40 again.

    Please see your doctor and work with him to get your meds adjusted properly. Until you see him please take extra care. There's a chance you could pass out with pressures that low.

    Please let us know how you are making out,
    Burt

    Leave a comment:

Today's Birthdays

Collapse

Working...
X