Sickle Cell Trait

[Miguelf]

Hi Im 21 years old and have been diagnosed with Sickle Cell Trait when i was seven, I have been experiencing some dizziness a couple days now which is very uncomfortable. It feels as if i am very intoxicated, moving my head and neck in certain directions is extremely discomforting as it feels like if the whole world is spinning rapidly around me. Can anyone relate, if so what treatment you used for it?

[MattBrutlag]

First of all you need to drink plenty of water in order to flush out any sickling centers in your system. You may also benefit from taking a low dose of anti-inflammatory such as Tylenol or Advil.

For the spinning try bonine for motion sickness. In the future also consider adding a B-complex and multivitamin to your daily intake if you are not already doing so.

If symptoms continue, see a doctor. In they don't help see another one, sadly sometimes you have to see a few before you find one that helps.

Good luck. You are in my prayers.

[Miguelf in reply to MattBrutlag]

Thank you so much! I am on B complex but I've tried multiple Doctors before and none of them really helped, prompting me to try someone new. Hopefully i can settle with this one, thanks for the advice. MattBrutlag

[RadiantSue]

Dear Miguelf:

I am a sickle cell trait patient (Hemoglobin AS). I do on exceedingly rare occasions have the symptoms you described. I have no proof and may be wrong, but I believe if I experience the kind of vertigo you are describing it is usually in the early to mid-spring. It does not happen every year. I have always wondered if my very mild, short duration, spring season allergy sometimes triggers sickling. Only twice in my entire life has it been severe enough to seek immediate medical attention. The other cause for me his a combination of heat, fatigue, and failing to eat. For some reason, I lose my appetite and become dehydrated. Again for me this is extremely rare. About five times in my life, I have lost my sight and the ability to remain standing. Twice I completely passed out. The other times everything turned gray but I could still hear people around me. Heat and dehydration are known causes of sickling. Whether it is sickle cell related or just dehydration, you must re-hydrate. If you find you have lost your appetite, keep candy or something to eat with you. Once I passed out in line waiting while waiting to purchase food at the register. So, I recommend sitting down or lying down BEFORE you fall down. If you are like me you get a warning, try not to ignore it.

Remember that the affects of hot days are cumulative. Cumulative in this context means that if you have been outside in high temperatures several days in a row, it will take time for your body to fully recover. I once made the mistake of exercising more on the first day the temperatures dropped ten degrees and passed out. This is the one symptom I am uncertain is directly caused by sickling. I know that indirectly sickling (as a documented fact) has impaired my ability to concentrate urine, so i have to work harder to remain hydrated and to recover if I become dehydrated.

I apologize for the long response. I write because I care. My last thought is that if you have become so dehydrated that you cannot seem to effectively replenish your fluids fast enough to stop the room from spinning. Then, you may wish to seek IV (intravenous) fluids from a health care provider. I know it seems extreme, but it is better than experiencing the agony of sickling crisis - or worse! I have only taken this action once following a bad case of the flu.

I wish you well! Let us know how you are doing and what you did to recover.

[Miguelf in reply to RadiantSue]

Hello RadiantSue thanks for the in-depth response as you did speak of some very similar symptoms. I never passed out but i did collapse once and yes it is very rare and I do believe that it is a case of vertigo as you stated. However I have seen a number of doctors and they haven't been very helpful in treating the cause of the problem. I live in a region where temperatures above and around 30 degrees celsius is an almost everyday occurrence so avoiding the heat isn't an option for me. However I place heavy emphasis on consuming around 4 liters of water a day but since this episode began i don't have appetite for anything, due to the constant upset feeling because I'm feeling as if everything is spinning around me.

Do take any medication that is actually helpful and offers immediate relief? Again thanks for replying with such depth because i feel as if I can relate to you.

[RadiantSue]

Dear Miguelf:

I am concerned about you. I cannot recommend a medication. I do recommend IV fluids and to rest until you revive. I mean cancel as much of your social life as you can until your body recovers. I suspect that there is an advantage to having one normal hemoglobin gene, and that is that we can recover if we take the warning signs seriously and ignore everyone telling us the trait cannot be cause of illness. Also, folic acid helps some people.

Did the doctor's test your hemoglobin count are you anemic? Be warned that a doctor's once told me that when I am dehydrated my blood count is inflated. She explained that only after IV fluids were administered and my blood count fell that they were seeing my actual blood count.

Do you have high blood pressure? Does your blood pressure spike when you are overheated and/or dehydrated?

Even if you are not anemic, are you experiencing any other symptoms? Can you feel a circulatory problem? For me it can vary from feeling like something crawling on my skin, and to globs of sticky honey trying to move through my blood vessels. SCD patients describe something far worse like glass moving through their veins. For me, sometimes it is very localized like around my hip joint, or a very specific spot on the right-side of my head.

You indicated you live in a warm climate. Do you also live at a high altitude (e.g. above 7,000 feet)? I visited a higher elevation in Guatemala five times without any problems. Then the sixth time I had real trouble. The only solution I have is to rest and take in room temperature fluids. Remember sickling is reversible studies show within three days. The studies I read are consistent with my experience. After the third, I usually feel better, but on rare occasions I become extremely worse.

Lastly, you mentioned a loss of appetite. I am experiencing this now as a result of being a little more dehydrated than is healthy for me. I recommend you have a complete panel performed. Once again, after a flu I recommend from the normal flu symptoms but could not regain my strength. I was tested and they discovered I was anemic and low on magnesium. They took no action and I would later end up in the hospital. Only after I fully recovered did I read the test results and see that I had a blood count around 9.

Have you seen a neurologist? Do you have normal thyroid function? Have you been tested for diabetes with a test suitable for sickle cell trait patients (see my recent post).

Please keep us posted on your progress.

I hope you improve soon. You have to find a doctor who will listen to you even if they believe the sickle cell trait is harmless, they may be able to treat your symptoms and improve your quality of life.

Susan

[Miguelf in reply to RadiantSue]

Hello RadiantSue I am not anemic nor do I have high blood pressure however i do experience the crawling under my skin sensation but I never thought anything of it. I don't live at high altitude but I am an athlete and during intense physical training sometimes i struggle badly to keep up, i also get dehydrated quicker than the rest of the guys and this is mainly when the crawling sensation kicks in. for me it usually occurs in my neck chest and face and I am also of the belief that because I have a SCT i tend to get muscular injuries far quicker than the regular person.

I went to the doctor last week and he said that there is something wrong with the area of my ear that is in charge of keeping my body balanced and he did refer me to an ENT clinic. He also didn't rule out my SCT as being a factor, I am going to get some blood work done sometime during the course of this week and and next week so I would keep you posted. Also my symptoms has been on the decrease after about 3 days as you indicated even though i am not 100% i am far better off than when i first posted. Thanks for your support.

Regards

Miguel.

[RadiantSue in reply to Miguelf]

Dear Miguelf,

Life is only worth living it we can do what we love, so understand why you wish to continue your intense athletic training. However, i believe knowledge is power, so I recommend you keep a log of your symptoms and what brings you any relief. If you ever feel your caught in a rapid downward spiral of symptoms, you must stop and rest no matter what and rehydrate. I am sure you knew that, but I had to be certain. I agree with what everyone said, rest, water and anti-inflammatories. Also, I have found sports drinks do work for me in the heat. It is my understanding that our sweat contains nutrients that must be replaced.

You are in my prayers. Let us know how you are doing.

Susan

[gyamfi_girls]

I do get the dizzy spells which my Doctor has given me tablets for of which I forget the name and have left them at home as am at hospital with my daughter who has had a Sickle Cell crisis when I get home I'll check and let you know, but as already mentioned plenty of fluids and rest also helps

[Miguelf in reply to gyamfi_girls]

Thanks and my prayers go out to you and daughter, hope all is well.