Medications & Alternative Therapies

I thought it interesting to describe the approach to "treatment" or management of the condition.

Of course when I bleed a lot I have to stop it as quick as I can. Unfortunately when my nose bleeds profusely, there's only two ways that the blood can come out. Of course, out the nose (forwards) or down my throat (backwards) for immediate processing (back up out the mouth) or deferred processing (well, let's just say No 2's).

Then depending on the volume & how quickly the bleeding clots, determines how much of the above happens & comes back up...

I've learned that the body has some great reflexes - that you dont need to worry about.

For example, when you are sleeping, the body wakes you up so you dont "drown" bleeding. I really appreciate that especially at 2.30 in the morning when I am fast asleep, and of course the "gag" reflex that expels the "foreign substances" from the stomach if too much blood goes down that way.

Lovely isnt it?

So, i'm adopting 2 sort of approaches in the management & prevention part.

MANAGEMENT of Active bleeds

TISSUES!!! For the management I tend to go through lots of tissues. I slow the bleeding by applying pressure to the nose - but sometimes I "choke" with the backflow of blood & have to let go & breathe & let the clots/bleeding run free... (btw, I used to like a comedy TV show 'let the blood run free' see http://www.imdb.com/title/tt0098846/ - how was I to know that later in life it would come back to haunt me in real life!!!!!!!!!!!) See also http://en.wikipedia.org/wiki/Let_The_Blood_Run_Free

Anyway, I keep a well stocked supply of tissues & boxes at home - in every room (as when I start bleeding lots, I need to 'rush' to the nearest supply....

There is also a difference in the types of tissues - I have to keep away from the scented variety (yes the Eucalyptus ones especially - see the saline section) as they do me more harm then help.

Some are 'rough' on the nose - the cheap & nasty ones.

One brand (but I cant remember which one) was too absorbent - so when I bled, the blood & clot hardened on the tissue. So when I pulled the tissue away the clot came with it starting the bleeding again. I think it was the 'rough' cheap ones that did that.

on a bad week I can go through 2-3 boxes a day (4-6 a week....) just dealing with absorbing the blood that comes out.

DRIXINE: One of the diagnosing ENT's recommended that I try drixine spray soaked cotton wool in my nose when I am having a big bleed. This is to act as a stopper and a constrictor.

However, when I have a big bleed, both hands are already being used to stop the bleed - so I've never been able to manage also trying to find the cotton wool & drixine, roll it up & put it in the nose. Too hard to manage.

Another ENT has recommended another time of blocking agent - a seaweed based gauze which looks a little like long strands of hair. It is expensive - about $15 for a small pack. It would probably be cut up into smaller pieces - but I'd have the same problem as the drixine - not enough hands available to help.

Most of the time when I have a bleed I am on my own, or with 'strangers' - so it's a bit hard to get them to help. At night, I dont want to wake anyone up, so I generally let it go... and manage it myself. I guess I can be a "burden" on them & wake them up to help, but we always seem to be so tired that I dont want to do that.


PREVENTION

SALINE SOLUTION

I've tried saline solution (to keep the nose 'sterile' & moist). Not sure whether that worked, as I found when I have my 'delicate moments' the pressure of the spray in the nostril would actually cause me to start bleeding. So I stopped using that.

I've recently resumed this as a preventative measure - but only when I'm not having bleeding episodes.

My mother-in-law recently referred me to a new FESS spray 'frequent flyer saline nasal spray'. She gave me a bottle of the tea tree one (which I understand is a good germ killer too). That was good but when it ran out I picked up a bottle of the Eucalyptus scented one. I only used it once - the smell was too overpowering & caused bleeding straight away.

Anything with a strong scent can start me bleeding. I have to be careful with things such as perfumes, strong scented hand creams; really strong smelling insect sprays & strong body BO - these all have caused me to start a bleed - even if I sit next to someone or near someone or walks by me. I have to be VERY careful. Holding my breath is no use as the scent is in the air & still irritates my nose!


VASELINE: is good - but clumpy. It keeps the inside of my nose moist & soft & keeps the crusty scabs at bay - when the tear of come away, they cause bleeding from the same spot in the nose & can cause a bigger bleed by tearing away more "area" & re-exposing the bleeding part of the nose. So it is a good preventative. Better in summer than winter as in winter is is very "clumpy" - summer it is softer. I guess the aim is like the saline solution, to keep the area soft, pliable & moist.

Coenzyme Q10: not sure what this is good for me - had a quick look on wikipedia, says that it is good for 'free radicals'; migrane headaches, cancer, blood pressure, etc. It actually says it is NOT present in the red blood cells but in other cells of the body.Grapseed 12000mg: this is primarily taken for cardiovascular health & blood circulation - and to strengthen the capillaries. Hence very important for me. The other thing they say is that the grapeseed maintains the flexibility of the skin & collagen - therefore the blood vessels remain "pliable".

Crampeze: I dont know whether leg cramps is a side effect of the condition or blood loss. But at times I go through severe leg cramps in my sleep. So I am trying this product (when needed). It seems to have Rutin (?) Citrus Bioflavonoids, magnesium & Vitamin B6 in it. I started this for a few weeks when I had bad bleeding last & leg cramps & it appeared to make the 'attacks' less pronounced & eliminated them. So it seems to have done it's job.

I've heard about the flavonoids before - Flavonoids have been referred to as "nature's biological response modifiers" because of strong experimental evidence of their inherent ability to modify the body's reaction to allergens, viruses, and carcinogens. They show anti-allergic, anti-inflammatory^[4] , anti-microbial and anti-cancer activity.

see wiki http://en.wikipedia.org/wiki/Bioflavonoids

Now for the "hard" stuff...

In order to keep the blood pressure under check I'm taking Atacand 32mg (candesatan cilexetil). The lower doses didnt seem to do anything this higher does was going ok until the last bleeding episode where I was clocked at 170/120...

So I'm supplementing that with Zanidip 10mg - I have 1 of these in the morning (atacand before I go to bed). I think, but maybe it's just me - that the atacand make me a little tired, so I find it better to take them at night.

The best stuff is the chloromycetin - eye ointment. I think this is the best stuff, an antibiotic type cream/paste that seems to be really good at "smoothing" & moistening inside my nose. I know that I always get a tube of that when I go to hospital & try to make it last as it is so good!

I dont like the metal tube one - the plastic tube one is so much better. (Remember the old tin-style toothpaste tubes where you couldnt get the last bit out? Same thing here).

Asthma Medication

This is an interesting one - last year I got very ill - probably pneumonia, combined with a fever; bleeding, vomiting & shortness of breath all at the same time. Made for an interesting hospital visit. One of the complexities of this issue is that you can have shortness of breath etc associated with I assume these "telangiectasias" in the lungs, etc. No evidence of that - but I do get the shortness of breath.

I take a preventer - Symbicort, and scale up the dosage when I need to; supplemented with a ventalin. This year this combination seems to have worked. Last year I went on a steroid based medicine a couple of times & that seemed to fix the problem immediately. I think the symbicort has the steroid agent in it.

Cyklokapron - Tranexamic Acid - see wiki http://en.wikipedia.org/wiki/Cyklokapron
This is the 'experimental' drug that I'm on. I find that it makes me quite ill as I have been taking it since November last year 1/day preventative, 2/day when the bleeding is happening. So I find that I am having 2/day most of the time now. Up until a month ago, I had been regularly taking it - then I stopped as I was fed up with being sick (nauseous) all the time. Then about 2 weeks later then bleeding came back with a vengeance. I dont know whether it was a total co-incidence or a sign that it actually was working - but I'm back on it again (and dont feel so sick anymore).

Wiki says is is often prescribed for excessive bleeding (particularly of the menstrual type). I got the 'third degree' the first couple of times from the pharmacists filling the order as to whether the doctors knew what they were doing... actually I got that too with the chloromycetin - "but it's meant for the nose.. not the eye".. and "your a bloke - not a woman" - derr. But it's worth a laugh!!

I have also learned to ask a lot more questions - both of the doctors & the chemists to make sure there's no contraindications. As I am taking quite a bit to get me back on track. It also helps to educate others on what these things are for. It's good for everyone I guess.

Wiki also says it is good for Haemophilia. I dont have that but when people see me bleeding that's what they think it is. Haemophilia is a blood disorder. I have a bleeding disorder (subtle difference?) HHT is a defect on the way the blood vessels form. Not on the "physics" of the blood. My blood looks great (apparently) under a microscope - it clots fine. It's just the blood vessels are not right which cause the blood to come out. It clots fine - it's just that when it gushes so fast it cant clot fast enough!!!! I think with Haemophilia, the main problem is not the "size" of the bleed but the "thickness" of the blood & it's ability to clot.

I think I may have mentioned in a previous post that one visit to the hospital the intern wanted to give me "the" needle (cant remember what that was) - to make my blood clot without doing the tests first. That would have been a deadly mistake as you cant give clotting agents to a person with normal blood. Thankfully he didnt give me that needle - but not through want of trying!!!!!!!!!!! (This was one time when I DID exert myself!!)

Interestingly, WIKI reports that Hemophilia A occurs in about 1 in 5,000–10,000 male births. I think the odds of HHT are about the same - depending on which resource you refer to! It looks like that hemophilia is caused by a lack of a factor in the blood. (my factors are fine). The genetics & hereditary of this is also different to HHT. Similar to HHT, there is no cure for hemophilia (YET!)

It is interesting in that some of the herbal treatments suggested for hemophilia are similar to hht, being Bilberry(Vaccinium myrtillus), Grape seed extract (Vitis vinifera), Scotch broom (Cytisus scoparius), Stinging nettle (Urtica dioica), Witch hazel (Hamamelis virginiana), and yarrow (Achillea millefolium).


I'll have to look into some of those one day.

The other thing I take in nexium 40mg. That is supposed to relieve the "sick" feeling. I dont think they are very effective as I still get queasy. These are also to stop reflux.

I did a sleep function (?) test last year at a private Hospital in ORANGE, NSW. That was a nice visit. The tests showed that I do have disturbed sleep - & breathing, but dont recommend anything as the bleeding issue is more of a concern. Wearing a mask at night could be very messy if I had a big bleed. The specialist said the machine could spray the blood everywhere; as well as drying out the nose. So not a good thing.


I also take some "special" supplements from my biochemist / naturopath. Having the acid medication was making me sick - he did some tests and found my stomach was acidic. I guess pretty obvious! He made up a simply wonderful mixture - a white powder which fizzes in certain drinks... I guess it must be pretty alkaline. took some - that day, not more sick feeling. Smart guy!!

I also take a metamucil like substance (when I remember). It is interesting because the way the biochemist understands the scheme of things is that the bleeding is linked to the GI (gastro-intestinal) system - so if it is under strain, it can effect things like blood pressure & bleeding etc etc. His interesting comparison is that if going to the toilet is "a strain" then that can put pressure on the GI system & promote bleeding. (The other little delightful circumstance is that if you 'consume' a lot of blood when you bleed it upsets your tummy & the No2's too...) so this stuff helps "soften and smooth" the output flow - if you know what I mean!!!!!!!

I also take a stong dose of VitC - much higher than you would normally take to try to fortify my system.

SO .. all this stuff is meant to help my body cope with what I am going through,.

I've saved the best one to last.

i've learnt that the biggest impact on my body from the bleeding (apart from the chronic fatigue & lethargy) is the effect on the blood - and therefore the rest of the body.

It seems that when I bleed the ferrin (iron) levels drop. The more I bleed the greater the drop.

Therefore it is critical that I replace the blood / iron quickly - so drinking a lot of "healthy" liquids is important - water & juice & eating green vegies.

The best thing I take is Clements Iron (an iron enriched dietary supplement - balance with vitamins & minerals. I've tried iron tablets, but they "dry me out" too much & take too long to work. So I take this iron mix in some orange juice, and that helps heaps. Boosts me up within a few hours & a really notice a difference.


So I've talked a bit about what I do before bleeding (preventative); during bleeding & after bleeding (post care).

Hope this info helps!!!!!!!!!!! It has been a long ride experimenting with what works & what doesn't. I think the most important thing to keep in mind is that you have to do what's best for your particular circumstance.

The most important thing I've learned is that depending on which part of the "bleeding" cycle I'm in - I actually have to apply different treatment (ie, scale up some things & scale back others); use different things in different proportions, etc.

So it's not one rule suits all! Even once I think I have this worked out - it's not - as I have to be flexible to suit where I am at.

This is also true for my work life now. Sometimes I dont have the energy to work - and so tired; so I have to scale back. Other times I am full of energy and stay up late (like now).

The other weird thing is that the "cycle" of bleeding & energy is different - and can be sometimes very short & other times very long.

For example - yesterday I was in a "bad way" for most of the day. Did not feel too good all day, but forced myself out & about (which is good) - but really really needed rest (not to feel sick, sore & sorry for myself - just felt physically tired).

Today - I woke up totally refreshed, had my first unbroken sleep in weeks & really got a lot achieved today. At other times the gap between feeling good and bad can be 3 to 4 weeks!

I really dont understand & really cannot work that one out!

BYE!!!!!!!!