My story

[ashka]

3 years ago I had a really sore eye ache and went to doctors 3 times only to be told there was nothing wrong and that it was probably from too much sun and sand which I am guilty of as beach it a lot. Only went to doctors thinking I needed a referral to go to optometrist but then found out that I could just walk in a make an appointment. Went to optometrist and within minutes I was putting eye drops in and making arrangements to go to Perth. Eyedrops stopped working very quickly. Had lazer which was super painful for about a week and that failed. Had a lens transplant which was did not go well and vision got blurry straight away. One has to have a lens transplant before a trabeculectomy apparently. Anyway had a trabeculectomy(last option when all else fails) and vision reduced from 70% to 2% as this type of eye operation is risky at the best of times. This all happened within 5 months. Within 18 months it started to hurt again and apparently the trabeculectomy has healed up so needs doing again!!!!!!

 

Perth is 750 kilometres away so a major effort and must have made well over 15 trips and stayed for weeks.

 

Many hours spent researching on the net showed the amazing benefits of cannabis on intraocular pressure so as any sane person would do, I started smoking it if I could get some to find it relieved all symptoms of pressure as well as any other ailments. So I started asking doctors, optometrist, opthamologist about trying it and have got a mixed reaction from (oh no think of all the side effects)!!!!!!!!!!! to (yes if you were in USA you would be handed a medical cannabis card instantly) and yes lots of people are having success with cannabis.

 

Now the opthamologist wants to start the whole process with my other eye.

 

I feel that I have given western medicine more than a fair go and appreciate their attempts to save my eyesight but would like the opportunity to at least try cannabis as it has been successful for other glaucoma patients. An Australian law is preventing me from trying to retain my remaining eyesight, now that would have to be constitutionally wrong as well as totally inhumane.

 

I dont want pity, just a fair go.

 

So as a matter of principle I will fight for the right of people to at least have the opportunity to try cannabis for themselves for whatever illness they suffer.

[4eyes]

Hi Ashka,

 

I understand your situation a little as I too have glaucoma. I was diagnosed three years ago and have been on a whole range of medications ever since. Each time I visit the opthamologist I end up with even more medication(s) added to what I'm already taking. Some of these medications include beta blockers, alpha inhibitors and so on. As I'm sure you know they have pretty terrible side affects.

 

When first diagnosed my IOP (inter ocular pressure) was well into the 30's. For the information of other members in this forum a normal IOP is considered to be in the range 12-18. The medications I am taking will bring this figure down to 20-22 as measured by the opthamologist. However I discovered that readings taken by my optometrist are generally a bit lower, around 16-18. The difference, I later found out, is termed "white coat" syndrome and happens when you are under stress i.e. doctors prodding and poking.

 

The opthamologist has discussed surgery with me. I have however decided it is not for me for a number of reasons which are not really important to this post.

 

Fortunately I have/had some savings and decided to take a different route. To this end I purchased a research grade Tonometer and training on it's use with which I am able to easily measure my own IOP, as well as other aspects of my eyes, at home several times per day. This was very much a revelation in three ways.

 

1) My IOP varies a lot during the course of a 24 hour period as it is tied into the diurnal cycle.

2) The various medications lower my IOP with the effects lasting between 12 and 24 hours depending on the specific medication (Xalacom 24 hours, Alphagan 12 hours). Timing the medications is important for best results.

3) Thirdly my lifestyle, diet exercise etc plays a significant role.

 

The third point is one that I can directly influence. I have been systematically researching any and all options/possibilities in this regard and have discovered some very interesting things. Exercise and stress are very important factors. 45-60 minutes of walking has a good effect, perhaps 4-5 points lower when done several times per week. Dealing with stress is also quite important as stress can raise my IOP into the stratosphere. A good diet helps with stress as it adds to my general well being.

 

Now the real point of this post and also the reason I joined this forum is that I have made a rather astounding discovery regarding IOP and marijuana. The published research results in this regard basically conclude that yes marijuana does lower IOP but only for a short period of time, often stated as 3-5 hours.

 

The discovery I have made and also repeated on numerous and every single occasion is that, at least for me, this is not true. The IOP lowering affect lasts for 48-72 hours. A recent example on the Saturday morning just gone my IOP was 22 on waking which decreased during the day to 18 ( a decrease during the day is pretty normal with it climbing again overnight and the highest readings occurring on waking. This is the diurnal cycle). I had some marijuana on the Saturday night. On waking Sunday morning my IOP was 9, exactly half. This morning, Monday. waking it was 12. Based on past experience tomorrow should see it around 16.

 

I don't need very much to to have this affect, perhaps 3 good hits from a vaporiser.

 

My wife is very anti drugs but even she is very impressed. This dramatic lowering of my IOP is something that can be measured and repeated time and time again. Ashka I'm happy to provide data around this for you or anybody else whom may be interested. Remember I mentioned Research Grade? This is the important point as the Tonometer is of Research Grade and built to special order by the manufacture. Whilst based on it is of a higher standard that the instruments generally used by the medical profession. Therefore the results cannot be questioned.

 

It must be said though that these results are specific to me and may/will vary with other people and I would not recommend marijuana use as a primary treatment for glaucoma nor would I advise anybody to stop taking prescribed medications.

 

So Ashka what I am saying is that there may be alternatives to surgery. Tonometers are expensive with the proper instrument costing as much as decent car. Perhaps one approach for you would be to find a local optometrist (OPSM etc) whom would be prepared to measure your IOP on a fairly frequent, perhaps daily, basis for a period of time. That way you can try a few things out and see how they work for you.

 

 

There is a lot more information and detail that I would be happy to provide you or any other interested party with.

 

Cheers

[ashka]

Thanks 4eyes for that interesting information, and yes I have found that my IOP is reduced for much longer than the said 3 to 5 hours.

 

You said you had glaucoma, do you know which type you have, is it closed-angle or open angle?

 

Agree with you about diet and excercise, have noticed that they make a huge difference but have been told that it does not matter what I eat or drink etc but diet is huge, it is what I believe triggered off my glaucoma attack even though I was born with a predisposition to glaucoma.

 

Check out Elvy Mussiki an american lady who swears by cannabis for saving her remaining eyesight when she could no longer stand the operations and resulting long term pain they cause plus the diminished eyesight that resulted with each procedure of which I can relate to very closely.

[4eyes]

Hi Ashka,

 

Primary open angle glaucoma with no family history. I see from your posts that your angles are closed?

 

I am pretty much over my opthamologists. His approach is to test every few months and then prescribe additional eye drops which all have fairly unpleasant side affects. The chemist misread the last new prescription and I ended up with a chemo drug! I didn't know and was pouring the stuff into my eyes twice a day. Know wonder I felt crook for the last couple of months.

 

What I don't get is how it is possible to prescribe medications or talk about surgery on the basis measuring IOP every few months when I know, due to my Tonometer, that it varies all through the day. To me its' a bit like a diabetic using insulin on the basis of one blood test every few months.

 

At least now I tend to know when spikes in my IOP are likely to occur and can fit my medication around these times.

 

There are some opthamologists whom approach things differently. You could try googling "international self tonometry"

 

Cheers

[ashka]

So relate to what you are saying about the whole eye drop scenario, have taken a lot and found no matter how long I pinch my nose it always ends up running down my throat which in turn causes a whole lot of new problems with your lung health.

 

Okay yes I do have closed-angle glaucoma but believe it was triggered by my use of aspartame in lozenges at the time. Have since found there are many others with a similiar link between aspartame and glaucoma and should have been more cautious of how neglectful our government really is towards our health by the way they treat our food and water supply and the whole medical industry as well.

 

MEDICAL CANNABIS is a much simpler solution without all the horrible side effects as many people worldwide can contest too so thats enough for me to want this medicine available as another choice for not only glaucoma sufferers but cancer, IBS, epilepsy, Chrones, arthritis, accident sufferers as well.

[glaucoma]

replied to your other thread Ashka but had to reply to this too

Like yrself I am also rural which makes access to medical info hard - travelling made even harder when never been able to drive and using public transport is difficult due to vision.

 

Good on you for going to police station etc. It is not an easy thing to do but I also recently went to local police station to "hand myslef in" as it were and try and get some information inregards to "compassionate" use of mj. One officer told me he'd happily arrest me, another told me I should start growing. I have also had meeting with local member of parliament (took a lot of work to get) but of course no understanding or help. Is absolutely ridiculous that these people are in charge of matters pertaining to health when my optometrist and specialists tell me I NEED to use canna as my glaucoma is very severe and doesnt react accordingly to normal medication. i cant have trabs or other ops as deemed too risky due to many other eye complaints.

 

For wanting to not go blind, for wanting to relieve some seriously awful pain, for wanting to help myself be a member of society who can contribute rather than be a burden I am considered a criminal.

 

Keep fighting and spreading the word Ashka - breaking the law in silence doesn't help any of use who have a genuine medical need.

 

I don't know if it would have any chance but I am seriously considering my legal options to see if there is any way of suing the Federal and State Governments for not allowing me access to a natural substance that is proven to help in a rather profound medical case. I believe it should be a human and legal right to access drugs that work rather than be given drugs that make the situation worse by medical "professionals".

 

all the best

[ashka]

Hi Glaucoma,

 

Count me in too, would gladly join you in any attempt to awaken our government to the much needed medicinal use of cannabis. Please keep us posted.

[ashka]

Just thought I would add a list of some of the side effects of one of the eye drops that I am prescribed!!!!!!!!!!!!!!!!!!!!

 

 

BODY AS A WHOLE: Headache, asthenia/fatigue, and chest pain. CARDIOVASCULAR: Bradycardia (SLOW HEART RATE), arrhythmia, hypotension (LOW BLOOD PRESSURE), hypertension (HGH BLOOD PRESSURE), syncope (FAINTING), heart block, cerebral vascular accident (STROKE), cerebral ischemia, cardiac failure, worsening of angina pectoris (CHEST PAIN), palpitation, cardiac arrest, pulmonary edema (FLUID IN THE LUNGS), edema (FLUID IN THE BODY), claudication (MUSCLES TIRED/CRAMPING), Raynaud's phenomenon (FINGERS/TOES TURN BLUE IN THE COLD), and cold hands and feet. DIGESTIVE: Nausea, diarrhea, dyspepsia (UPSET STOMACH), anorexia, and dry mouth. IMMUNOLOGIC: Systemic lupus erythematosus. NERVOUS SYSTEM/PSYCHIATRIC Dizziness, increase in signs and symptoms of myasthenia gravis, paresthesia (NUMBNESS/TINGLING), somnolence (SLEEPINESS), insomnia (INABILITY TO SLEEP), nightmares, behavioral changes and psychic disturbances including depression, confusion, hallucinations, anxiety, disorientation, nervousness, and memory loss. SKIN Alopecia (LOSS OF HAIR) and psoriasiform rash or exacerbation of psoriasis. HYPERSENSITIVITY Signs and symptoms of systemic allergic reactions, anaphylaxis, including angioedema, urticaria, and localized and generalized rash. RESPIRATORY Bronchospasm (predominantly in patients with pre-existing bronchospastic disease), respiratory failure, dyspnea (SHORTNESS OF BREATH), nasal congestion, cough and upper respiratory infections. ENDOCRINE Masked symptoms of hypoglycemia (LOW BLOOD PRESSURE) in diabetic patients (see WARNINGS). SPECIAL SENSES Signs and symptoms of ocular irritation including conjunctivitis (REDNESS OF THE EYE), blepharitis (DANDRUFF OF THE EYELID), keratitis (CORNEA IRRITATION), ocular pain, discharge (e.g., crusting), foreign body sensation, itching and tearing, and dry eyes; ptosis (DROOPY EYELID); decreased corneal sensitivity; cystoids macular edema (RETINAL SWELLING); visual disturbances including refractive changes and diplopia (DOUBLE VISION); pseudopemphigoid; choroidal detachment following filtration surgery (see PRECAUTIONS, General ); and tinnitus (EARS RINGING). UROGENITAL Retroperitoneal fibrosis, decreased libido

[Saul Goodman]

Lotta side effects there!